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 Uplifting Athletes’ 2023 Young Investigator Draft Class. Dr. Abeykoon was nominated for the grant by the Erdheim Chester Disease Global Alliance. Dr. Abeykoon is Assistant Professor in […]
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 more online connections and smaller, regional meetings. We have launched a Patient Navigator Program to help guide patients one-on-one through the […]
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 as part of the Histiocytosis Society (HS) annual meeting. The HS is an international group of more than 200 physicians and scientists committed to improving the lives of patients with […]
New Paper Details Challenges of Caregiving for ECD and Rare Disease Patients 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 (ECD). The paper was created through a collaboration of physicians and health organizations, including the Erdheim-Chester Disease Global […]
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 (CAMS&PUMC) to host the webinar Understanding My Rare Disease with Dr. Cao. On September 29, 2022, the initiative brought over 65 families from the China region together […]
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 of Cincinnati! Information will be shared about the UC clinic, staff, specialists they work with, and what makes their center special. 10:15 am – […]
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) Global Alliance is proud to announce a new emerging ECD Referral Care Center located at the University of Florida (UF) in Gainesville. Dr. Ali Ataya, who specializes in pulmonary […]
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 deserving volunteers during National Volunteer Week. ECDGA volunteers are the life force of the organization, supporting its small staff and contributing more than 2,000 hours of service to numerous programs […]
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, with 1 in 10 Americans being affected. Patients that have a rare disorder have longer periods of suffering before finding answers. Often, patients are treated “off-label” (treatments […]
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 college football to shine a spotlight on rare diseases. Founded in 2007, Uplifting Athletes funds research and other initiatives, bringing hope to rare communities. Each year the […]
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 2021 ECD Research Grant to Dr. Francesco Pegoraro, with Meyer University Children’s Hospital, Florence, Italy. The winning proposal, Exploring the genetic landscape of Erdheim-Chester disease by integrating […]
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 Disease with a matching gift campaign through December 31, 2021! Thanks to an $80,000 matching gift from a group of generous ECDGA Board […]
8th Annual ECD Medical Symposium Virtual Event November 16, 2021 Slides and Speaker Information | Recording
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 held online from 9:00 am to 2:15 pm CT (UTC -5) on Tuesday, November 16, 2021. During this conference, medical professionals from around the world will gather to share […]
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 challenges of the pandemic, serving our members remained the top priority. Through regularly scheduled chat sessions, education webinars, and a commitment to support, ECDGA has been able […]
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 (ECDGA) was formed research was needed to help improve the diagnosis and treatment of Erdheim-Chester Disease (ECD). Little was known about […]
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 audience consisting of mostly physicians and a smaller number of patients. One session during the conference included the ECD Global Alliance (ECDGA) and Histiocytosis Association (HA) […]
Erdheim-Chester Disease Awareness Week September 13 – 18, 2021 #SharingIsKey #ECDawareness #AwarenessWeek The ECD Global Alliance is hosting its 7th Annual Erdheim-Chester Disease Awareness Week! Join our community in raising awareness of the ultra-rare ECD now through September 18, 2021. Please consider helping our team share information about Erdheim-Chester Disease with others. The […]
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 Atnip family gathered on the recent Father’s Day to reach new heights together in support of their father and husband, and the entire community! Climbing […]
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 introduce the newest addition to the ECD Referral Care Center network, University of Michigan Rogel Cancer Center, Ann Arbor, Michigan. The lead physician at this center is […]
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 alliance of leading cancer centers—has published a new NCCN Guidelines® for Histiocytosis. These clinical practice guidelines provide the latest evidence and expert-consensus for diagnosing and treating the three most common forms […]
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 and regions all over the world will hold awareness-raising activities. Approximately 300 million people (about 5% of the population) suffer from a rare disease. Within […]
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) Global Alliance welcomes Erasmus University Medical Center in Rotterdam, Netherlands into its Referral Care Center Network to help Erdheim-Chester disease patients. Leading this ECD-knowledgeable team is Dr. Jan Am van […]
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 matching gift campaign running from December 1 to December 31, 2020! Thanks to an $80,000 matching gift from a group of generous […]
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 for several years, even enduring an unusually painful bone marrow transplant. Thankfully, I was a match for her and it extended her life with us, […]
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 received. Many patients are faced with other effects that are not direct side-effects of the disease. Below are a […]
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 targeted-therapies. If you are being treated with a BRAF or MEK-inhibitor, or simply enjoy being outside in the summer, ensure that you are […]
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 UK) asked patients, healthcare professionals and payers (who finance healthcare within a country’s health system) for their perspectives on the impact of rare disease. Almost all the 20 payers included in the […]
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 learned that electrical energy arises from the electric potential difference between positive and negative charges. In the months of March and April 2020, 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 team of volunteers, donors, medical professionals, and staff who make it all possible. This week the ECDGA […]
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 disease. This group of experts agree on evidence-based and state-of-the-art (state-of-the-science) knowledge. Its main objective is to counsel physicians on the best possible and […]
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 information with the assistance and guidance of our trusted medical professionals. Due to the increase in COVID-19 cases worldwide and the need for all our medical professionals to be on the front lines, our blog […]
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 – https://www.cdc.gov/coronavirus/2019-ncov/specific-groups/high-risk-complications.html – for CDC guidance. In summary, the CDC recommends: Stock up on supplies (medicines, household items, […]
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 activities. Approximately 300 million people (about 5% of the population) suffer from a rare disease. Within that 5%, […]
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 importance of a patient registry, and why you should […]
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 that are considered to be in remission* from the disease. Thanks […]
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 countless donors, volunteers, and medical professionals, the ECDGA has been able to support patients and research efforts dedicated to ECD around […]
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 celebration! From October 10 to December 12, the 10-10-10 event will be our simplest year-end fundraiser ever! Here are some […]
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 the trials and tragedy led her to what the ECD Global Alliance is today. Alongside the parents of an ECD patient, who has since passed away, […]
7th Annual ECD Medical Symposium Milan, Italy July 11, 2019 “ECDGA provides important resources for my patients that has led to faster diagnosis. It also provides a community for patients with a rare disease to feel less alone.” – Mark Heaney, MD, 2019 Attendee
Second Set 6th Annual ECD Medical Symposium Orlando, FL November 15, 2018 “[The ECD Global Alliance] has helped me and my patients by] bringing experts together to make collaborative progress.” – Ronald S. Go, MD, 2018 Attendee
5th Annual ECD Medical Symposium New York, NY October 25 – 26, 2017
4th Annual ECD Medical Symposium Paris, France September 15, 2016 Summary of Presentations
3rd Annual ECD Medical Symposium Houston, TX October 8th, 2015 2015 ECD Medical Symposium Summary
2nd Annual ECD Medical Symposium Bethesda, Maryland September 18, 2014 2014 ECD Medical Symposium Summary
1st International ECD Medical Symposium San Diego, CA October 31, 2013 2013 ECD Medical Symposium Summary
Last updated: September 13, 2021
rare connect
