News
Select a Category
Dr. Sam Reynolds of Moffitt Cancer Center shares his perspective on the importance of research in advancing understanding and care for Erdheim-Chester Disease.
Watch the video and help us ...
The ECD Global Alliance is pleased to announce that its 12th Annual Erdheim-Chester Disease Medical Symposium will be held August 27-29, 2027, in Glasgow, Scotland.
Medical professionals, ...
We are excited to announce that the 12th Annual ECDGA Patient and Family Gathering will be held August 27-28, 2027, in Glasgow, Scotland!
This special gathering will bring together patients, ...
The ECD Global Alliance is accepting Letters of Intent for its 2026 Early Career Investigator Grant. Up to $60,000 USD will be awarded for a two-year research project focused on Erdheim-Chester ...
ECD may be rare, but no one has to face it alone.
Across the world, patients, caregivers, physicians, researchers, volunteers, and advocates are working together to build a stronger future ...
Today's discoveries create tomorrow's possibilities.
Research has transformed what we know about ECD and continues to improve diagnosis, expand treatment options, and deepen our understanding ...
Every ECD story matters. In this video, Ann Zernone shares her personal perspective and reminds us of the strength, hope, and connection found within the ECD community. Watch and share to help ...
Every ECD diagnosis has a story.
Some stories begin with years of unanswered questions.
Others are filled with resilience, courage, and hope.
Today we honor every patient, every ...
Rare diseases require rare expertise.
Because ECD is so uncommon, many healthcare professionals may never encounter a patient during their careers. Connecting patients with physicians ...
For many people with ECD, the road to a diagnosis is measured in years, not weeks.
The sooner ECD is recognized, the sooner patients can begin their journey toward answers, expert care, and ...
Dear ECDGA Community,
No one should have to navigate a rare disease alone.
As we enter the final week of ECD Awareness Month, our focus turns to something at the heart of the ...
Dear ECDGA Community,
Hope grows when knowledge moves forward.
As we enter Week 3 of ECD Awareness Month, our focus turns to Hope Through Research and to the physicians, researchers, ...
Dear ECDGA Community,
Rare should never mean invisible.
This is week 2 of ECD Awareness Month, and we are asking our entire global community to help more people see, understand, and ...
One person learning about ECD may not seem like much.
But one conversation can lead to an earlier diagnosis.
One shared post can reach someone searching for answers.
One moment of awareness ...
Ziggy Knows...
Myth: ECD only affects bones.
Fact: ECD can affect many organs throughout the body and few have no bone involvement. Every person's experience is unique.
That's why ...
Ziggy Knows...
People with ECD spend years searching for answers. Research has shown that after symptoms first appear, it takes an average of 4.2 years to get an ECD diagnosis.
Learning ...
Ziggy Knows...
There isn't one symptom that defines ECD.
Some people experience bone pain, fatigue, excessive thirst, balance problems, skin changes, shortness of breath, or other ...
Ziggy Knows...
ECD is considered ultra-rare. Researchers found that about 1 to 2 out of every 10 million people were newly diagnosed with ECD in the US during 2021 and 2022.
Many ...
Ziggy Knows...
Erdheim-Chester Disease (ECD) is an ultra-rare blood cancer that can affect many different parts of the body, including the bones, heart, brain, kidneys, lungs, skin, eyes, and ...
ECD Awareness Month is here! In this special message, ECD Global Alliance Board President Diane Schriner shares how learning, connecting, and raising awareness can make a meaningful difference ...
Hi! I'm Ziggy, your ECD Awareness Guide.
Throughout September, I'll be sharing facts, answering common questions, introducing inspiring members of our community, and helping make ...
ECDGA Community,
This week marks the beginning of ECD Awareness Month, and we’re starting with one of the most important steps we can take together: helping more people understand ...
During ECD Awareness Month, we've talked about research, expert care, patients, caregivers, families, volunteers, advocacy, and the people working every day to create progress.
But awareness ...
Rare diseases need people willing to speak up.
Every conversation about ECD can increase awareness and help patients, families, healthcare professionals, and communities better understand ...
Caregivers give an extraordinary amount of themselves.
They attend appointments, coordinate care, ask questions, provide encouragement, and help navigate difficult days. Their own needs can ...
ECD affects more than the person who receives the diagnosis.
Families become appointment companions, researchers, organizers, advocates, listeners, and sources of strength while navigating ...
Behind so much of what happens in the ECD community are people who simply decided to help.
Volunteers contribute their time, talents, experience, and energy to support patients, increase ...
No two experiences with ECD are exactly the same.
Every patient and caregiver has a story. When those experiences are shared, they can educate others, create connections, and help someone ...
There is something powerful about talking with someone who simply gets it.
ECDGA chats and webinars give patients and caregivers a place to share experiences, ask questions, exchange ideas, ...
Sometimes the most important thing you can hear is, “I can help.”
The ECD Patient Navigator helps patients and families find information, understand available resources, connect with the ECD ...
An ECD diagnosis can feel overwhelming, especially when the disease is something most people have never heard of.
But no one has to navigate ECD alone. Around the world, patients and families ...
As we close another week of ECD Awareness Month, we celebrate everyone who makes progress possible.
Thank you to the physicians searching for answers, the researchers making discoveries, the ...
Progress happens because people work together.
Patients, caregivers, physicians, researchers, volunteers, advocacy organizations, supporters, and ECDGA all play an important role in moving ...
The future of ECD research is full of possibility.
Researchers around the world continue exploring new treatments, better ways to diagnose ECD, and deeper insights into how the disease ...
Not long ago, very little was known about ECD.
Today, researchers understand far more about the disease than ever before. Advances in diagnosis, greater collaboration among specialists, and ...
Behind every discovery are dedicated physicians and researchers working to improve the lives of people with ECD.
Their commitment to caring for patients, conducting research, and sharing ...
Every breakthrough starts with a question.
Clinical research helps us better understand ECD, improve diagnosis, evaluate treatments, and learn more about how this rare disease affects ...
Hope begins with expert care.
ECD Care Centers bring together physicians with experience diagnosing and treating this ultra-rare disease. They also help advance research, educate healthcare ...
Finding Movement That Works for You
Living with Erdheim-Chester disease (ECD) often means adjusting to changes in energy, mobility, balance, strength, or endurance. While every person's ...
You don't have to be a scientist or a doctor to make an impact.
You can help by:
Sharing information about ECD.
Supporting ECD Global Alliance.
Listening to patient stories.
...
In 2027, the ECD Global Alliance (ECDGA) and the Histiocyte Society (HS) will hold their first-ever joint annual meeting in Glasgow, Scotland, August 27–31, 2027. The planned schedule is:
...
We're excited to announce that the 12th Annual Erdheim-Chester Disease Patient & Family Gathering will be held in Glasgow, Scotland, on August 27 and 28, 2027!
Join patients, caregivers, ...
Dear ECD Community,
We are excited to announce that the 12th Annual Erdheim-Chester Disease Patient & Family Gathering will be held in Glasgow, Scotland, on August 27 and 28, ...
Living with Erdheim-Chester Disease (ECD) often means paying close attention to your health. Between appointments, treatments, and the many demands of daily life, it can be easy to overlook one ...
Our hearts are full.
Because of your incredible generosity, enthusiasm, and support, the ECDGA Virtual Fun Run, Walk, or Roll raised an amazing $23,626.00!
Whether you donated, ...
We are incredibly grateful to everyone who made this year's ECDGA Virtual Fun Run, Walk, or Roll such a remarkable success.
Because of the generosity and dedication of our amazing community, ...
As our ECDGA Virtual Fun Run, Walk, or Roll comes to a close, we invite you to be part of something bigger than a fundraiser. You can be part of a community united by hope, compassion, and a ...
By midnight tomorrow, our $10,000 Matching Challenge comes to an end, and we need just $999.00 to unlock the full match for the ECDGA Virtual Fun Run, Walk, or Roll.
This is more than a ...
Time is running out! There are just 2 days remaining to take advantage of our $10,000 Matching Challenge, which means every dollar you give will be matched dollar for dollar until June 30 or ...
Give a huge round of applause to Team Rocky Mountain High Captains, (Bob and Janet Froetscher), who completed an incredible 10-mile bike ride as part of the ECDGA Virtual Fun Run, Walk or Roll! ...
For many people, sunshine means outdoor activities, vacations, and time spent with family and friends. For individuals living with Erdheim-Chester Disease (ECD), however, sun exposure can ...
When someone hears the words "You have Erdheim-Chester Disease," they often have more questions than answers.
Where do I find information?
Who can help me understand this disease?
...
Did you know?
A gift made today goes twice as far because of our Final Week $10,000 Matching Challenge.
Every dollar helps ECDGA provide patient support, educational resources, advocacy, ...
We have an incredible opportunity.
A generous donor has offered $10,000 in matching funds for the final days of our ECDGA Virtual Fun Run, Walk. and Roll..
That means every dollar donated ...
The ECD community has always shown what is possible when people come together for a common purpose.
This week, we have an exciting opportunity to maximize that impact.
A generous supporter ...
Did you know?
A $50 donation becomes $100.
A $100 donation becomes $200.
A $250 donation becomes $500.
Thanks to a generous matching donor, every gift made this week counts TWICE toward ...
This week, every donation goes twice as far.
The ECDGA is excited to announce a special Week 3 Matching Gift Challenge for the 3rd Annual Fun Run, Walk or Roll.
A generous donor has ...
One of the best parts of the ECDGA Fun Run, Walk or Roll is seeing our community come together from around the world.
This week, we're asking participants to help us tell the story of our ...
We want to feature YOU during the ECDGA 3rd Annual Fun Run, Walk or Roll!
Send us photos of:
Team members
Walks, runs or Rolls
Team gatherings
Your photos may be featured on our social ...
Please highlight on the website as a news story
WEEK 2 CHALLENGE IS HERE!
This week is all about building your team!
Recruit 5 or more new team members and your team will receive a $150 bonus added to your fundraising total!
Invite ...
Welcome to Week 2 of the ECDGA 3rd Annual Fun Run, Walk or Roll!
This week, we're focusing on one of the most important parts of our event—building your team.
Every new participant helps ...
THE FUN RUN STARTS TODAY!
Welcome to FAST START MATCH WEEK
For Week One only:
Top 3 Teams
Top 3 Individual Fundraisers
will each receive an EXTRA $100 added to their fundraising ...
The ECD Global Alliance is excited to announce that our 3rd Annual Fun Run will take place from June 1–30, 2026!
Registration is officially open, and we invite patients, caregivers, families, ...
Ziggy is proud to announce the ECDGA 2026 Award Honorees individuals whose leadership, dedication, and advocacy continue to inspire meaningful change throughout the Erdheim-Chester ...
Time is almost up to secure your spot for one of the most meaningful events in the Erdheim-Chester Disease (ECD) community. The 2026 Patient & Family Gathering will take place in Birmingham, ...
Registration is closing soon for the 2026 Erdheim-Chester Disease Global Alliance (ECDGA) Medical Symposium, taking place April 30–May 2, 2026, in Birmingham, Alabama.
This annual event is a ...
The Erdheim-Chester Disease Global Alliance (ECDGA) was honored to host Dr. Julio Santori-Valinotti of the Mayo Clinic during a special “Expert Hour” at the ECDGA booth at the American Academy ...
Registration is open for the Patient and Family Gathering taking place April 29–30, 2026, in Birmingham, Alabama. This event brings together patients, families, and caregivers to connect with ...
The Erdheim-Chester Disease Global Alliance (ECDGA) invites physicians, researchers, and healthcare professionals to attend the ECDGA Medical Symposium, taking place April 30 – May 2, 2026, in ...
Sleep is more than rest—it’s a key part of managing Erdheim-Chester Disease.
This Sleep Awareness Month, we’re sharing simple, practical tips to help ECD patients improve sleep, reduce ...
The official 2026 Erdheim-Chester Disease Global Alliance (ECDGA) Patient & Family Gathering T-shirt is now available. Celebrate community, connection, and strength with this Birmingham-inspired ...
The Erdheim-Chester Disease Global Alliance (ECDGA) invites physicians, researchers, and healthcare professionals to attend the ECDGA Medical Symposium, taking place April 30 – May 2, 2026, in ...
Registration is open for the Patient and Family Gathering taking place April 29–30, 2026, in Birmingham, Alabama. This event brings together patients, families, and caregivers to connect with ...
Your support helps create awareness, compassion, and hope.
Here’s how you can help today:
Share your story
Make a gift to support our mission
Learn more and advocate for rare ...
Every ECD journey is unique. There is no one-size-fits-all diet, and nutrition should always complement, not replace, medical treatment. Listening to your body and working closely with your ...
Ziggy recently had the pleasure of interviewing Rebecca Boone about her journey with ECD. Rebecca shared her personal experiences, challenges, and the impact ECD has had on her life. Her ...
As we prepare for Rare Disease Day, it’s a good time to ask a simple question: What does “rare” really mean? In the U.S., a disease is considered rare if it affects fewer ...
A look back at the moments, milestones, and messages you may have missed.
As 2025 comes to a close, we’re taking a moment to look back at a year that brought connection, education, progress, ...
Final Reminder: February 1 Deadline for Registration, Awards, Patient Posters & Financial Assistance
This is a final and important reminder that February 1, 2026 is the deadline for ALL submissions: registrations at the early bird rate, award nominations, patient posters, and financial ...
We are excited to announce that registration is now open for the 2026 ECD Global Alliance Patient & Family Gathering, taking place in Birmingham, Alabama!
Early bird registration is ...
Living with Erdheim-Chester Disease (ECD) can be overwhelming. As a rare and complex condition, ECD often leaves patients and caregivers feeling isolated, uncertain, and unsure where to turn. ...
We are pleased to announce that registration is now open for the 2026 ECD Global Alliance Medical Symposium in Birmingham, Alabama. This important annual event brings together clinicians, ...
The Erdheim-Chester Disease Global Alliance (ECDGA) is pleased to announce the appointment of Jerome Henson as its new Executive Director. Jerome brings with him more than 30 years of leadership ...
In just one week, the ECDGA $30,000 Impact Challenge has brought us to an incredible $27,000 raised. We are deeply grateful for every person who has supported this effort.
Now, we are ...
We’re already 30% of the way toward unlocking our $30,000 new Impact Challenge match, and it’s all thanks to supporters like you.
$25 becomes $50
$50 becomes $100
Every dollar matters. ...
We’re excited to share a new animated short featuring Ziggy the Zebra, the ECD community’s friendly mascot. In this brief video, Ziggy explains how the ECD Global Alliance hosts monthly online ...
The holiday season is often filled with celebration, connection, and meaningful traditions. But for individuals living with Erdheim-Chester disease (ECD), this time of year can also bring unique ...
Reminder: Abstract Submissions Close February 1, 2026
The ECD Global Alliance invites clinicians, researchers, and medical professionals to submit abstracts for consideration at the 2026 ...
As 2025 comes to a close, the ECD Global Alliance reflects with gratitude on the strength and generosity of our incredible community. Because of your support, we continue to advance research, ...
Registration is NOW OPEN for the 2026 ECDGA Medical Symposium!
Early bird registration is open until February 1, 2026.
Join us on May 1, 2026, at the Marnix E. Heersink Conference Center at ...
Registration is OPEN for the 2026 ECDGA Patient & Family Gathering!
Early bird registration is open until February 1, 2026!
Join us in Birmingham, Alabama, for our annual Meet & Greet ...
This weekend, ECDGA Board President Diane Schriner and staff member Jerome Henson had the privilege of meeting with esteemed medical leaders at the American Society of Hematology (ASH) ...
The Erdheim-Chester Disease Global Alliance (ECDGA) is pleased to announce the addition of Nottingham University Hospitals NHS Trust in Nottingham, United Kingdom, as an officially ...
For those living with Erdheim-Chester Disease, every day brings unknowns. But today, our community comes together to show that no one walks this journey alone.
Your Giving Tuesday donation ...
Today, our friend Ziggy the Zebra is stepping up to help raise awareness and support for those living with Erdheim-Chester Disease (ECD) — a rare and challenging condition that needs more ...
The Erdheim-Chester Disease Global Alliance (ECDGA) is proud to participate once again in Giving Tuesday and our End of Year Campaign—a time when our community comes together to create hope, ...
ECDGA President Diane Schriner, staff member Jerome Henson, and Dr. Mitali Sen, rheumatologist from the University of Alabama at Birmingham, attended the American College of Rheumatology (ACR) ...
The Erdheim-Chester Disease Global Alliance (ECDGA) is excited to announce that Dr. Gaurav Goyal of the University of Alabama at Birmingham (UAB) recently met with ECDGA Board President Diane ...
A new study from Memorial Sloan Kettering Cancer Center highlights the promise of ulixertinib, a targeted therapy drug that blocks ERK, for treating certain forms of histiocytosis — including ...
This week, ECDGA President Diane Schriner, Board Member Paul Hendrie, MD, and team member Jerome Henson are proudly representing the Erdheim-Chester Disease Global Alliance at the 41st ...
Ziggy the Zebra, the beloved mascot of the Erdheim-Chester Disease Global Alliance (ECDGA), is here with a heartfelt message of gratitude.
To our patients, families, friends, and dedicated ...
Erdheim-Chester Disease Global Alliance Announces 2026 Patient & Family Gathering and Medical Symposium
Birmingham, AL — The Erdheim-Chester Disease Global Alliance (ECDGA) and UAB School ...
Ziggy the Zebra is back with a special challenge for Erdheim-Chester Disease Awareness Week—wear your stripes!
By putting on stripes this week, you’re showing solidarity with the ECD ...
The Erdheim-Chester Disease Global Alliance (ECDGA) is excited to share that every session from our 2025 Patient & Family Gathering and Medical Symposium—held May 26–27 in vibrant ...
This Erdheim-Chester Disease Awareness Week, we’re honored to introduce you to Edith and Mike Watters, a remarkable couple whose journey reflects the courage, resilience, and creativity of our ...
At the 2025 Erdhem-Chester Disease Medical Symposium in Barcelona, the ECDGA Junior Investigator Award went to Laura Eurelings of Erasmus University Medical Centre, Rotterdam.
Her ...
The July 31 Canada Monthly Chat was a truly special event, featuring guest speaker Gary Tobin, who shared his extraordinary journey of resilience and survival after being diagnosed with stage 4 ...
ECD Awareness Week is September 8–14, 2025, and we need YOU to help raise awareness and show the world what it means to be part of the ECD family.
Awareness Week is important because ...
Erdheim-Chester Disease, also called ECD, is a very rare kind of blood cancer. It is so rare that some medical articles estimate that only about 2,000 cases around the world have been ...
The Erdheim-Chester Disease Global Alliance (ECDGA) is excited to introduce our newest team member—Ziggy the Zebra!
Ziggy isn’t your average zebra. Ziggy represents awareness, ...
The Erdheim-Chester Disease Global Alliance (ECDGA) is pleased to announce the 2025 Call for Letters of Intent (LOIs) for research projects focused on Erdheim-Chester Disease (ECD) and related ...
The ECD Global Alliance (ECDGA) is proud to announce the release of the complete video recordings from the 2025 Annual Patient & Family Gathering in Barcelona.
If you were unable to ...
Please join me in welcoming Diane Schriner as the new ECD Global Alliance President.
Diane has been an integral part of the ECDGA Board of Directors since 2018 and has served as Vice ...
We are sharing an opportunity to participate in the University of Alabama at Birmingham (UAB) Survivorship Study—a vital research effort focused on understanding the experiences, challenges, and ...
The Erdheim-Chester Disease Global Alliance (ECDGA) is proud to announce the addition of a new ECD Care Center at University College London Hospitals (UCLH), located in London, England (NW1 ...
The Erdheim-Chester Disease Global Alliance (ECDGA) is proud to announce the recipient of its 2024 Early Career Investigator Grant: Dr. Priya Marathe, a clinical instructor in pediatric oncology ...
The 2025 Get Ready to Run, Walk & Roll for Hope Fun Run has officially come to a close, and we are absolutely thrilled to announce that we not only met our fundraising goal… we surpassed ...
Participating in the ECDGA’s annual Run, Walk & Roll for Hope is powerful on its own—but forming a team can take your involvement to an entirely new level. Whether you’re rallying coworkers, ...
The 2025 Run, Walk & Roll for Hope brings together supporters from all corners of the globe in the fight to raise awareness for Erdheim-Chester Disease (ECD). For those participating ...
Each year, the Erdheim-Chester Disease Global Alliance (ECDGA) invites the world to come together for one powerful reason: to raise awareness for Erdheim-Chester Disease (ECD), a rare and often ...
Every year, a powerful wave of determination, compassion, and solidarity spreads across the globe as individuals lace up their shoes to participate in the Erdheim-Chester Disease Global ...
Each year, the Erdheim-Chester Disease Global Alliance (ECDGA) hosts a singular event that brings together physicians, researchers, and care specialists from across disciplines and across ...
Title: “Layers of Complexity: ECD Diagnosis and Management in the Presence of Confounding Comorbidities”
Time: 1:30 PM – 1:55 PM
Location: Bellvitge University Hospital Auditorium
As ...
The Erdheim-Chester Disease Global Alliance (ECDGA) welcomes medical professionals from around the world to the 2025 Annual Medical Symposium on Erdheim-Chester Disease, held in Barcelona at ...
Speaker: Eli Diamond, MD
Time: 10:50 AM – 11:05 AM
Date: May 26, 2025 Patient & Family Gathering
For many individuals living with Erdheim-Chester Disease (ECD), the involvement of the ...
Speaker: Julien Haroche, MD, PhD
Time: 9:35 AM – 9:55 AM
Date: May 26, 2025 Patient & Family Gathering
In the world of Erdheim-Chester Disease (ECD), few names are more widely ...
The Patient and Family Gathering is one of the most anticipated events of the year for the Erdheim-Chester Disease community. Each session is carefully selected to offer insight, clarity, and ...
As you prepare to attend the 10th Annual Patient and Family Gathering hosted by the Erdheim-Chester Disease Global Alliance (ECDGA), we want to ensure you have all the practical information and ...
Why Early Diagnosis Matters in Erdheim-Chester Disease: Marc’s Story
Being diagnosed with a rare disease like Erdheim-Chester Disease (ECD) can be overwhelming. For many, the path to finding ...
Progress in Erdheim-Chester Disease (ECD) doesn’t happen in isolation. It’s made possible through collaboration among scientists, clinicians, and the patients and families who push forward ...
https://youtu.be/H2v4dkzyBV0?si=p9RMNVAWgRwNjgDv
In less than three months, the global Erdheim-Chester Disease (ECD) community will come together for the 10th Annual ECD Conference in Barcelona. This milestone event unites medical experts, ...
Raising awareness for a rare disease like Erdheim-Chester Disease (ECD) takes more than facts and figures—it takes people. It takes passion, imagination, and community spirit. And ...
When someone first hears the words Erdheim-Chester Disease (ECD), it can feel like stepping into unfamiliar territory—an ultra-rare diagnosis that most have never encountered. But from the very ...
Hope in the Lab: MSK Research Sheds Light on ECD and the Brain
A newly published study featured in the March 26, 2025, Memorial Sloan Kettering Cancer Center (MSK) Research Highlights offers ...
The Erdheim-Chester Disease Global Alliance (ECDGA) is honored to support forward-thinking research that helps unravel the mysteries behind Erdheim-Chester Disease (ECD). One of our most ...
The Erdheim-Chester Disease Global Alliance (ECDGA) is proud to spotlight one of the innovative research projects currently funded through our grant program. Led by Dr. Francesco Peyronel at ...
After a day filled with knowledge, shared stories, and powerful conversations at the 2025 Patient & Family Gathering, the ECD Global Alliance invites all attendees to join us for a heartfelt ...
When living with a rare condition like Erdheim-Chester Disease (ECD), daily choices—like what’s on your plate—can make a meaningful difference in how you feel. While there is no specific “ECD ...
Traveling can be exciting—but for individuals living with Erdheim-Chester Disease (ECD), it can also come with added considerations. Whether you’re attending your very first ECDGA Patient & ...
Every voice matters in the journey toward better understanding and treating Erdheim-Chester Disease (ECD).Whether you’re newly diagnosed, caring for a loved one, or simply looking to make a ...
An Introduction for Those Newly Diagnosed
If you or a loved one has recently received a diagnosis of Erdheim-Chester Disease (ECD), you may be feeling overwhelmed, confused, or even scared. ...
At the 10th Annual ECD Conference in Barcelona, something truly unique happens—patients, families, and medical experts come together in the same room, with a shared purpose: driving progress in ...
Erdheim-Chester Disease (ECD) is a complex and rare condition that can affect multiple organs and systems in the body. From the bones and heart to the kidneys and brain, ECD’s impact is often ...
Fatigue is one of the most common—and often most frustrating—challenges faced by individuals living with Erdheim-Chester Disease (ECD). This isn’t just feeling tired at the end of a long day. ...
For over 15 years, the Erdheim-Chester Disease Global Alliance (ECDGA) has been a beacon of hope for patients, families, and researchers dedicated to understanding and treating Erdheim-Chester ...
Over the past decade and a half, remarkable advancements in Erdheim-Chester Disease (ECD) research have reshaped our understanding of this rare condition. Scientists and medical experts have ...
In less than three months, the global Erdheim-Chester Disease (ECD) community will come together for the 10th Annual ECD Conference in Barcelona. This milestone event unites medical experts, ...
Fatigue is one of the most common and challenging symptoms experienced by individuals with Erdheim-Chester Disease (ECD). Unlike typical tiredness, ECD-related fatigue can be persistent and ...
For those living with Erdheim-Chester Disease (ECD) and their loved ones, finding a supportive community and reliable medical insights can make all the difference. The ECD Patient & Family ...
Erdheim-Chester Disease (ECD) is a rare histiocytic disorder that often goes undiagnosed for years due to its varied and complex symptoms. Early recognition by both patients and medical ...
Tomorrow is the last day for EARLY BIRD PRICING!
10th Annual Erdheim-Chester Disease International Conference
Conference Dates: 26-28 ...
10th Annual Erdheim-Chester Disease International Patient & Family Gathering
Friday is the last day for EARLY BIRD PRICING! Prices increase March 1!
Conference Dates: 26 May ...
Every year, on the last day of February, the global community comes together to recognize Rare Disease Day—a vital initiative that highlights the challenges faced by individuals living with rare ...
ECD Global Alliance shows our stripes for Erdheim-Chester Disease awareness on #RareDiseaseDay, February 28. There are 300 million people with rare diseases. The lack of scientific knowledge and ...
There is so much progress yet to be made in researching treatments for Erdheim-Chester Disease (ECD) and all rare diseases. As an ultra-rare blood cancer that affects multiple organs, ECD ...
Don’t miss the deadline! February 24 is the last day to submit abstracts for the 10th Annual ECD Medical Conference. All abstracts related to Erdheim-Chester Disease or adult histiocytic ...
Every year, on the last day of February, the global community comes together to recognize Rare Disease Day—a vital initiative that highlights the challenges faced by individuals living with rare ...
Don’t miss this unique opportunity to learn more about adult histiocytosis and Erdheim-Chester Disease. Come to learn, to share your research, to connect with experts, or to experience beautiful ...
Please join us! The ECD Patient and Family Gathering (PFG) unites patients and family members while increasing knowledge and understanding of Erdheim-Chester disease.
The PFG provides ...
Join us for a transformative 2-½ day conference bringing together cross-specialty physicians, scientists, patients, and their families from around the world. This unique event focuses on ...
Come join us on May 26 in Barcelona, Spain to learn the latest about ECD treatments and meet others who are also living with this disease. Patients, family members, friends, and medical ...
The ECD Global Alliance invites researchers and clinicians to submit abstracts showcasing the latest advancements in Erdheim-Chester Disease and related fields. Share your research and difficult ...
This is your opportunity to learn more about ECD. You will hear from world experts to increase your knowledge about this complex disease and how to best treat it.
ECD Patient & Family ...
Do you know someone who has made a meaningful impact in the Erdheim-Chester Disease (ECD) community? Now is your chance to honor their contributions by nominating them for a 2025 ECDGA Award. ...
Abstract submissions are now open for the 10th Annual International ECD Medical Symposium, taking place on May 27, 2025, in Barcelona, Spain. This premier event ...
Dates: May 26-28, 2025
Location: Barcelona, Spain
Join renowned medical professionals, researchers, and healthcare leaders at the premier global event dedicated to advancing knowledge and ...
Registration is officially open for the ECD Patient & Family Gathering 2025, a fantastic opportunity for Erdheim-Chester Disease (ECD) patients, caregivers, and families. This year’s ...
In a recent short video, Mark Anderson shared an inspiring message encouraging viewers to support the Erdheim Chester Disease Global Alliance (ECDGA). His message underscores the importance of ...
The Erdheim-Chester Disease Global Alliance (ECDGA) is proud to announce that nominations are now open for the prestigious Mark Heaney Memorial Award for Awareness. This annual award ...
In a recent short video, Mark Anderson shared an inspiring message encouraging viewers to support the Erdheim Chester Disease Global Alliance (ECDGA). His message underscores the importance ...
Represent your country, your state, or your fight in our Virtual Run/Walk/Roll! By wheelchair, bike, or other means, come join us in this virtual event held during ECD Awareness Month (September ...
A new study will help better understand disease-causing cells within ECD.
Uplifting Athletes, a nonprofit organization dedicated to serving the rare disease community, has announced that Dr. Jithma Abeykoon will receive a $20,000 research grant as a member of ...
The Erdheim-Chester Disease Global Alliance awards Young Investigator Research Grant to an Italy doctor to explore the genetic landscape of ECD.
A rare disease advocacy group was awarded an Erdheim-Chester Disease Research Grant to conduct a survivor study.
The University of Florida Health joins the Erdheim-Chester Disease Global Alliance Referral Care Center network in Gainesville, Florida.
The ultra-rare cancer group welcomes the second center of care knowledgeable in treating ECD in the Florida region this year. We welcome the Moffitt Cancer Center in Tampa, FL to the network!
Hospital Universitari de Bellvitge Becomes First ECD Global Alliance Referral Care Center in Spain!
Cobimetinib is an anti-cancer medication that was first approved for the treatment of melanomas.
Sharing a year of hope with the ECD community!
View the 2022 Year-End Newsletter.
Over the past two years, the ECD Global Alliance adjusted to the new norms of distancing and travel bans with ...
International Histio Advocacy Coalition Meeting
Stockholm, Sweden
September 2022
Patient advocacy groups from around the world, including the ECD Global Alliance, gathered in September 2022 ...
A new paper published in Lancet eClinicalMedicine, details both the meaningful benefits and the challenges of caregiving for patients with rare cancers, such as Erdheim-Chester Disease ...
The ECD Global Alliance has partnered with lead physician Dr. Xinxin Cao of Peking Union Medical College Hospital, Chinese Academy of Medical Sciences & Peking Union Medical College ...
Join us virtually on October 7, 2022!
Register for Online Attendance
Times are shown in Eastern U.S. Time.
10:00 am - Dr. Robert Franklin
Welcome to the University ...
June 3, 2022 - The University of Florida Health joins the Erdheim-Chester Disease Global Alliance Referral Care Center network in Gainesville, Florida.
The Erdheim-Chester Disease (ECD) ...
The ECD Global Alliance (ECDGA), a non-profit dedicated to supporting people affected by an ultra-rare blood cancer known as Erdheim-Chester Disease (ECD), honors ...
Rare Disease Day is on February 28, 2022! In the United States, a disease is considered rare if it affects fewer than 200,000 Americans, 7,000 illnesses fall into this category, ...
A rare disease advocacy group awarded an Erdheim-Chester Disease Research Grant to conduct a survivor study.
Uplifting Athletes is a nonprofit organization focused on using the platform of ...
The Erdheim-Chester Disease Global Alliance awards Young Investigator Research Grant to Italy doctor to explore the genetic landscape of ECD.
The ECD Global Alliance (ECDGA) has awarded the ...
Erasmus University Medical Center in Rotterdam joins a network of hospitals skilled in treating Erdheim-Chester disease patients.
New clinical practice guidelines from National Comprehensive Cancer Network focus on workup and management for three main adult histiocytic disorders.
The Erdheim-Chester Disease Global Alliance is proud to announce the first ECD Referral Care Center to be located in Michigan.
Tuesday, November 16, 2021: During this conference, medical professionals from around the world gathered to share scientific findings, patient outcomes, and case studies related to ...
A new year of hope is on the horizon for the ECD community!
View the 2021 Year-End Newsletter.
The ECD Global Alliance is reaching new levels of support for those fighting Erdheim-Chester ...
Tuesday, November 16, 2021
Join the experts during this scientific meeting to learn and share findings for histiocytosis.
The 2021 Erdheim-Chester Disease Virtual Medical Symposium will be ...
A rare community will join together to connect & learn.
Finally, the Erdheim-Chester Disease (ECD) community of patients, loved ones, and physicians will gather together again! During the ...
You can play a big part in fighting ECD.
If you are a patient or direct caregiver, please participate in this survey by October 30, 2021.
Take the Survey
When the ECD Global Alliance ...
An international histiocytosis virtual meeting was held this September during Histiocytosis Awareness Month of 2021. The webinar was organized and hosted by the OR Association of Spain, with the ...
Erdheim-Chester Disease Awareness Week
September 13 - 18, 2021
#SharingIsKey #ECDawareness #AwarenessWeek
The ECD Global Alliance is hosting its 7th Annual ...
The member-hosted ECD Virtual Run/Walk this month has served to raise funds for research on this rare disease, increase awareness, and pull together supporters for all those fighting ECD.
The ...
The Erdheim-Chester Disease Global Alliance is proud to announce the first ECD Referral Care Center to be located in Michigan
Erdheim-Chester Disease Global Alliance (ECDGA) is pleased to ...
National Comprehensive Cancer Network (NCCN) Guidelines for Histiocytosis
Published March 2021
The ECDGA is pleased to announce that the National Comprehensive Cancer Network® (NCCN®)—an ...
WHAT IS RARE DISEASE DAY?
February 28, 2021, will be the 14th International Rare Disease Day coordinated by EURORDIS. On and around this day, hundreds of patient organizations from countries ...
Erasmus University Medical Center in Rotterdam joins the ECD Referral Care Center network of hospitals skilled in treating Erdheim-Chester disease patients.
The Erdheim-Chester Disease (ECD) ...
The ECDGA welcomes the O’Neal Comprehensive Cancer Center at the University of Alabama at Birmingham (UAB) into the referral care center network that serves Erdheim-Chester disease patients worldwide.
ECDGA awards a research grant to the University of California-San Diego to improve the understanding of ECD and LCH, in addition to generating hypotheses and models that will allow for novel ...
An observational study of informal caregivers (ICs) of patients with Erdheim-Chester Disease (ECD) and other histiocytic diseases is now recruiting. Caregivers of patients participating in the ...
A new year, new programs, and renewed HOPE are on the horizon for the ECD community!
The ECD Global Alliance is reaching new levels of support for those fighting Erdheim-Chester Disease with a ...
By Chris Evans - ECD Awareness Week 2020
My sister, Raina, was diagnosed with a histiocytic disorder similar to Erdheim-Chester Disease in many ways. She fought valiantly against the disease ...
Facing a rare disease can seem like an uphill battle from time to time. The side effects of rare diseases, such as ECD are not only seen and felt from the disease itself or the treatments ...
As spring slips away and summer is within our grasp, our natural urge to enjoy the great outdoors intensifies. However, even limited sun exposure can be dangerous to ECD patients under some ...
Living with a rare disease can be hard: mentally, physically, and even financially draining. A 2013 survey called the Rare Disease Impact Report (conducted in the US and ...
ENERGY
By Giuseppe De Simone
(MARCH-APRIL 2020)
In these difficult days, we need the energy to deal with coronavirus. So now I'm going to talk about energy.
At school, I ...
You are likely already a member of the ECD Global Alliance and we hope that you have been able to find help and comfort in the resources that we have available to our members. It is our amazing ...
What is a consensus?
A medical consensus is a report on a specific subject, such as Erdheim-Chester Disease, from a group of medical experts that have a particular knowledge of the ...
The intent behind our blog is to update our members with important information that can affect the daily lives of ECD patients and their families. We try to provide this ...
We are all aware of the COVID-19 virus (coronavirus) risks that are currently in the news. In light of this and on the advice of the CDC, it is prudent for anyone with underlying medical ...
CALLING ALL ADVOCATES!
February 29, 2020, will be the 30th International Rare Disease Day coordinated by EURORDIS. On and around this day, hundreds of patient organizations from countries and ...
Are you a part of the ECD Patient Registry?
Did you know that it is extremely important to take part in such a registry?
Understanding every aspect of trials, registries, or simply getting ...
For many patients, pain and fatigue are a constant reminder of having Erdheim-Chester Disease. Pain and fatigue can occur in ECD patients regardless of the presence or absence of BRAF mutations. ...
The following link is to the protocol for an ECD study as announced by Dr. Augusto Vaglio of the University of Parma in Italy. ECD patients are invited to participate by sending in medical ...
Caregiver Information
Any caregiver interested in connecting with others who love and care for ECD patients, please contact the organization.
Caregiving is a very difficult job. For many ...
Foreign Language Instructions to Register for the ECD Conference in Barcelona on 26 May 2025
Open Chrome as your internet browser.
Go to the registration page at - ...
The ECD Medical Symposium was hosted by Dr. Lorenzo Dagna at the IRCCS San Raffaele Scientific Institute, Vita-Salute San Raffaele University. The Milan, Italy event was held 10-11 July ...
Over the last 11 years, Rare Disease Day has become iconic as the global campaign for raising awareness of rare diseases among politicians, clinicians, researchers, and pharmaceutical companies. ...
Representatives from the ECDGA attended the Endocrinology Society’s annual conference in New Orleans to raise
awareness of ECD among attending endocrinology specialists.
The US Food and Drug Administration has granted a Breakthrough Therapy Designation to cobimetinib in the treatment of patients with histiocytic neoplasms (Erdheim-Chester Disease, Rosai-Dorfman, ...
MD Anderson Cancer Center in Houston, Texas takes lead on Dabrafenib and Trametinib drug trial.
Yet another year is coming to a close! We are grateful to the ECD community for continuing to support the organization in its mission to serve families around the world.
With the help of ...
We are 10 YEARS STRONG!!
The ECDGA is raising funds for the future and we need your help! We ask you to request 10 of your friends or family to donate $10 each for a 10-week ...
Vaccination Statement
The ECD medical community strongly encourages that COVID vaccinations be pursued by everyone. Conversations are advised between individuals and their medical teams about ...
The ECD Global Alliance awards an Erdheim-Chester disease research grant to MSKCC to define the disease-initiating cell population in ECD and compare genetic alterations.
The ECD Global Alliance welcomes Duke Cancer Institute in Durham, NC into the referral care center network that serves ECD patients worldwide. Richard F. Riedel, MD will be leading the ...
The ECD Global Alliance announces the launch of the Registry for Patients with Erdheim-Chester Disease led by Memorial Sloan Kettering Cancer Center (MSK), in New York, NY. The next step in ...
Medical residents and physicians at Houston Methodist Hospital in Houston, TX learned about Erdheim-Chester disease from ECD Care Center lead, Mark Heaney, MD, PhD from Columbia University ...
The Erdheim-Chester Disease Global Alliance welcomes the Stanford Histiocytosis Program at Stanford Health Care as the newest ECD Emerging Care Center.
The University of Miami hosted a medical presentation to further residents’ education in histiocytic disorders. The speaker, ECD Care Center lead Dr. Ronald Go of Mayo Clinic in Rochester, MN, ...
Hematologists from around the world eagerly engage with ECDGA exhibitors to learn more about this rare disease.
Peking Union Medical College Hospital joins an elite group of hospitals skilled in treating Erdheim-Chester disease patients.
Nashville, TN is the newest location Erdheim-Chester Disease patients can go for treatment by ECD-knowledgeable doctors.
Pathologists eagerly engage with ECDGA exhibitors to raise their awareness of ECD.
Erdheim-Chester Disease and the NIH Undiagnosed Disease Program were the topics of discussion at the joint LSU and Tulane University event.
“Erdheim-Chester disease: Characteristics & Management” is presented by Filip Janku, MD, PhD
Funding from ECD patients and their families and friends opens access to treatment facilities regardless of patient location.
The Erdheim-Chester Disease Global Alliance adds four new ECD Care Centers in Canada and Europe.
FDA Grants Priority Review and Breakthrough Therapy Designation for Zelboraf (vemurafenib) in Erdheim-Chester Disease with BRAF V600 Mutation.
Assuta Medical Center joins an elite group of hospitals skilled in treating Erdheim-Chester disease patients.
The Erdheim-Chester Disease Global Alliance is proud to announce the first ECD Referral Care Center to be located in Australia.
First FDA-Approved drug for this rare disease
Exceptional contributors recognized at the Third Annual International Erdheim-Chester Disease Patient & Family Gathering.
The ECD Global Alliance awards Erdheim-Chester Disease research grant for new treatment possibilities using the RCCS™ Bioreactor.
Erdheim-Chester Disease is one of 7,000 rare diseases supported by the Louisiana proclamation.
Erdheim-Chester Disease is one of 7,000 rare diseases supported by the local proclamation.
Local rare-disease patient organizes fundraiser to raise awareness of Erdheim-Chester Disease in Indiana.
The Seattle Cancer Center Alliance and Toronto’s Mount Sinai Hospital join the ECD Care Center network.
Washington University in St. Louis and The Cancer Institute of São Paulo – the University of São Paulo in Brazil provide Erdheim-Chester Disease patients with more care opportunities.
Washington University in St. Louis joins the Erdheim-Chester Disease Care Center Network.
The American University of Beirut Medical Center joins the rapidly growing Erdheim-Chester Disease care system.
The World Health Organization reclassifies the rare disease
The Erdheim-Chester Disease Global Alliance supports those affected by Erdheim-Chester Disease out of DeRidder, Louisiana
The Erdheim-Chester Disease Global Alliance supports the rare disease by hosting events abroad.
A film was created to increase awareness of ECD and provide hope to those fighting this disease. A special thanks to the video participants and Trovagene, Inc. for sponsoring the film.
Louisiana is the ECDGA’s office location and the state has issued a Proclamation for its first-ever ECD Awareness Week.
First of its kind – ECD Referral Care Centers were made possible in part by pharmaceutical funding.
TMC Houston News announces the 3rd Annual Symposium in their events section.
The Erdheim-Chester Disease Global Alliance awards two grants in 2015 for top ECD research projects from leading research institutions.
No results found.