Blog
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 ...
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 ...
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 ...
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 ...
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 ...
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 ...
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 ...
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) ...
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 - ...
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 ...
Matriarch, President and Founder of the ECD Global Alliance: Kathleen Brewer. Over the last 10 years, Kathy kept her promise to never stop searching for answers.
Kathy’s perseverance through ...
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 ...
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