COVID-19 (corona) Virus Precautions
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 conditions to take precautions. Please see...
Rare Disease Day 2020
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 regions all over the world will hold awareness-raising...
What is the ECD Patient Registry?
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 treatment for a rare disease can be overwhelming. Let us help explain the...
Pain & Fatigue
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. These symptoms may be seen in newly diagnosed patients as well as those...General Announcements
2018 Patient and Family Gathering
The 6th Annual International ECD Patient Gathering will be held in Orlando, Florida on November 15 – 16, 2018. Medical professionals will share the latest findings related to ECD and offer information and tips to optimize patient care. All ECD patients and caregivers are encouraged to attend. Registration is now open!
Accomplishments, Blog Announcements
2018 Patient and Family Gathering
The 6th Annual International ECD Patient Gathering will be held in Orlando, Florida on November 15 – 16, 2018. Medical professionals will share the latest findings related to ECD and offer information and tips to optimize patient care. All ECD patients and caregivers are encouraged to attend. Registration is now open!
Board/Staff Announcements
Volunteer Appreciation
In addition to the dedicated Board of Directors, the ECD community is grateful for the work of volunteers that support the ECDGA on projects that maintain the mission to serve those affected by ECD across the globe!
Care Monitoring Announcements
A Leap Forward in Rare Disease Treatment
This video was produced to provide patients with hope and information. Featured in the short film are knowledgeable ECD physicians, ECD patients, and a family member. They demonstrate that targeted therapies are resulting in dramatic improvements in patient outcomes, bringing real hope for the future of patients affected by ECD.
Funding, Grant Announcements
2018 ECD Medical Symposium
The 6th Annual International ECD Medical Symposium will be held in Orlando, Florida on November 14 - 15, 2018. Medical professionals will share the latest research findings related to ECD, discuss the care of patients, and develop collaborations to further research. All medical professionals with interest in ECD and ECD patients are encouraged to register.
Host Fundraisers Announcements
ECD Awareness Week
The 3rd Annual ECD Awareness Week is September 10-15! Bringing awareness of this rare disease is crucial. You can make a global impact this ECD Awareness Week by spreading awareness and garnering support for Erdheim-Chester Disease families around the world.
Newsletters Announcements
ECD Patient Registry is Recruiting!
The ECD Patient Registry is a medical database collecting information and/or samples from patients diagnosed with ECD. This data will be used to help scientists advance our knowledge of ECD and its treatment. Read about the registry and sign-up below.
Past Awards Announcements
2018 ECD Medical Symposium
The 6th Annual International ECD Medical Symposium will be held in Orlando, Florida on November 14 - 15, 2018. Medical professionals will share the latest research findings related to ECD, discuss the care of patients, and develop collaborations to further research. All medical professionals with interest in ECD and ECD patients are encouraged to register.
Social Connections Announcements
Tell Your Story
Help others that are battling ECD to not feel alone. Share your journey and raise awareness! We encourage you to submit a story to The Mighty and make your voice heard.
Studies/Trials Announcements
ECD Patient Registry is Recruiting!
The ECD Patient Registry is a medical database collecting information and/or samples from patients diagnosed with ECD. This data will be used to help scientists advance our knowledge of ECD and its treatment. Read about the registry and sign-up below.
Treatments Announcements
ECD Trials Open
Follow the link below for "Clinical Trials for ECD Treatment" to learn more about the current trials accepting ECD patients.