First Chinese ECD Referral Care Center
The Peking Union Medical College Hospital in Beijing, China joined the ECD Referral Care Center network recently. Xin-Xin Cao, MD leads the ECD-knowledgeable team at this center, where as many as 30 patients have been seen. Find our more in the press release!
2017 ECD Patient & Family Gathering
The 5th Annual International ECD Patient & Family Gathering will bring together physicians, patients, and families to learn about various disease management topics and to experience fellowship with others that understand this rare disease. Please consider joining the ECD community this year in New York, NY on October 27, 2017. Find out more HERE.
Rare Disease Day is February 28, 2017
Rare Disease Day is held on the last day of February every year to raise awareness of rare diseases. Join the ECD community on February 28, 2017 to raise your voice, spread awareness, and be a part of this annual event supporting rare diseases like Erdheim-Chester. Find out about this event and how you could get involved HERE.
#GivingTuesday – November 29, 2016 – UPDATE
Giving Tuesday is an international day of giving. Family and friends showed their support of the ECD community by contributing to the ECD Global Alliance. Thank you to each of the donors and to the patients and families that shared their stories to encourage and inspire support.
ECD Patient & Family Gathering and Medical Symposium in Paris – UPDATE
Thanks to all 2016 event participants, the meetings were a huge success. Find out more about these events and their available presentations and photos at the following links.
ECD Patient & Family Gathering ECD Medical Symposium
#ECDAwareness for Research – Your Donations Matched up to $25,000! – UPDATE
In honor of ECD Awareness Week on September 12 -17, this research campaign was kicked off by the generous matching challenge of an anonymous donor for the entire month of September. Thanks to the ECD community members, family and friends, over $25,000 was raised, making $50,000 available for a 2017 ECD research project! Thank you to all that participated and showed their support, making this a successful campaign!
We’re Partnering with The Mighty
We’re thrilled to announce a new partnership that will bring our resources in front of The Mighty‘s wide-reaching readership. We will now have a growing home page on The Mighty and appear on many stories on the site. The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness and disability. More than half of Americans are facing serious health conditions or medical issues. The Mighty publishes real stories about real people facing real challenges. We’re dedicated to helping people with Erdheim-Chester Disease in their lives. With this partnership, we’ll be able to help even more people. We encourage you to submit a story to The Mighty and make your voice heard.
Erdheim-Chester Disease Declared a Histiocytic Neoplasm
The World Health Organization has reclassified Erdheim-Chester Disease as a histiocytic neoplasm. This means the rare disease is now considered a slow-growing blood cancer that may originate in the bone marrow or a precursor cell. The March announcement represents a significant step toward improving the support for sufferers. Read the press release here to learn more.
National Volunteer Week
During the week of April 10-16, 2016, the ECDGA celebrated their volunteers during National Volunteer Week. Efforts were made to recognize the volunteers for 2016 that have logged many hours serving the ECD community. From event planning to website reviews, all of the ECD volunteers have contributed to the mission of the ECDGA and we are grateful for their empowerment, passion, and loyalty.
Multiple Languages Added to the Website
Thanks to a large group of talented volunteers, the ECDGA website will now host 10 additional languages! The translated pages include general information about Erdheim-Chester Disease and sections related to diagnosing, treating, and monitoring the disease. Patients will also be able to access a registration form in their language to join the organization. Event information and resources will be added to these pages as well as they become available. Our hope is to reach and support more patients and physicians worldwide. Please help by sharing this information with non-English speaking individuals in your community. The pages are accessible from the top menu “Languages”.
ECD Care Centers Join the Network
Two new international institutions join the ECD Care Center system- American University of Beirut Medical Center (Lebanon) and The Cancer Institute of São Paulo – University of São Paulo (Brazil). In the U.S., Washington University in St. Louis, MO joins the network. Found out more about these additions in our press releases. For a map and information about the ECD Care Center Network visit Care Centers.
Rare Disease Day 2016 – Update
The ECDGA joined in a worldwide event, Rare Disease Day, on February 29, 2016. For this annually proclaimed event, rare diseases unite and raise their voices to help improve education and awareness about rare disease and seek improvements in their legislature. Thank you to all of our members and supporters for getting involved to educate the world about Erdheim-Chester Disease! Volunteers from the US and Canada published their stories with local news, hosted fundraisers, created graphics for the day, shared media post about ECD, and donated to the ECDGA and its mission.
The ECDGA Awards Erdheim-Chester Disease Research Grant for New Treatment Possibilities
Primary investigators, Marina Ferrarini, MD and Lorenzo Dagna, MD from San Raffaele Scientific Institute benefit from the 2015 grant awarded for “Tailoring Treatment for Erdheim-Chester Disease”. The study is set to begin in 2016 and to take place at the investigators’ research institution using a state-of-the-art cell culture system, the RCCSTM bioreactor.
ECD Patient Registry
The ECD Global Alliance is funding the development of an ECD patient registry under the leadership of Dr. Eli Diamond, MSKCC, and Dr. Matthew Collin, Newcastle University. A database to collect comprehensive demographic, clinical, therapeutic, and patient-centered information about and from ECD patients will be available for data entry beginning sometime in 2016. The information collected will be available to the ECD patient and scientific community to allow for (1) evidence-based treatment recommendations and (2) for the design of rational clinical trials to optimize outcomes in ECD.
$25,000 Matching Grant Challenge – Update
This challenge was presented anonymously by one of our members who pledged to match, dollar for dollar, every donation made from October 27 to December 31, 2015, up to $25K. We are very excited to report that $90K was raised for the ECD community!! With the $25k matching donation, this raises the total to $115K!! This allowed the organization to fund 3 ECD research grants in 2015! Thank you to all that contributed to this success by sending in your donations and inviting friends and family to help! By working together we have proved that a small group of dedicated people can make big things happen. Your efforts also helped raise awareness of ECD in the process – great job!
Giving Tuesday Success
The ECDGA partnered with Razoo, our online donation site, to create a 2015 #GivingTuesday online fundraiser on December 1. Our goal was to raise $10K and we exceeded this by raising $10,274 plus an additional $1k from external fundraisers for this day. Thank you to all members, donors and supporters that helped to achieve this accomplishment!
This year’s accomplishments and highlights can be found in the 2015 newsletter. This issue highlights the ECD Referral Care Centers and the new ECD Patient Registry. Thank you to all ECDGA supporters who have made the success of the organization possible!
2015 Grant Awards
Two awards were granted to discover more about ECD! Filip Janku, MD, PhD and Abdel-Wahab, MD were awarded a $50,000 grant. Eli Diamond, MD and Vaios Hatzoglou, MD were awarded a $43,000 grant for their project.
Proceedings of the UK Histiocytosis Forum 2015
In the first session of this conference, Matthew Collin, M.D. gave an overview of the pathogenesis of LCH and ECD, the involvement of different kinase gene mutations and the differences between multi-system and single system disease.
The New England Journal of Medicine Publishes Article on Vemurafenib Basket Study
“Vemurafenib in Multiple Nonmelanoma Cancers with BRAF V600 Mutations” was published on August 20, 2015. This article is significant to the ECD patients and physicians due to the successful use of the off-label, oral inhibitor for Erdheim-Chester Disease and Langerhans’-cell histiocytosis. It is hoped that this will help lead vemurafenib to become an approved treatment for this disease. Please contact us for more information.
ECDGA was awarded a $15,000 Grant
Sobi, Inc. of Sweden has awarded a grant to the ECD Global Alliance to implement the network of ECD Referral Care Centers. This grant will bring the Centers of Care leaders from around the world together for a ground breaking meeting to officiate this milestone for the ECD community. The Centers will provide standardized practices for the treatment of ECD patients at centers around the world.
New ECD Film Produced
“A Leap Forward in Rare Disease Treatment” was recently 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.
$100,000 Grant Available in 2015
A research grant up to $100,000 will be awarded to an ECD investigator this year. Letters of Intent were due on April 2, 2015. The Medical Advisory Board will appoint a committee of advisors to evaluate the inquiries and recommend approval. The increase in ECD-interested researchers is astonishing and encouraging; this is providing hope for better treatment and care. Stay tuned to find out who will be awarded!
2014 Grant Awarded to Drs. Diamond and Collin
The ECDGA awarded the 2014 grant to Dr. Eli Diamond (MSKCC) and Dr. Matthew Collin (Newcastle University) to create a sustainable ECD Patient Registry database to compile comprehensive data about the diagnosis, clinical management, treatment outcomes, and patient-centered outcomes of ECD patients worldwide. A big thank you goes out to these amazing investigators and their team for their dedication and commitment to the ECD community. We will keep all interested parties apprised on the upcoming process of data entry and services with the new registry.
Last year’s accomplishments and highlights can be found in the 2014 Newsletter. From new research trials to big participation in fundraising, the year was remarkable. Thank you to all ECDGA supporters who have made the success of the organization possible!
3rd Annual Medical Symposium
This year’s symposium will be hosted by MD Anderson Cancer Center in Houston, TX on October 8, 2015. All physicians interested in learning more about ECD are welcome to attend. If you wish to present at this event, your abstract can be submitted to Dr. Filip Janku by July 31, 2015. Email: FJanku@mdanderson.org Phone: (713) 563 – 0803. Please follow the link to learn more about this event and register.
3rd Annual Patient & Family Gathering
Join us for the 3rd Annual Gathering for patients and families! This year’s event will be hosted at the Houston Marriott Medical Center in Houston, TX on October 9-11, 2015. Medical professionals of various therapies will be presenting up to date information on treatments and care. Patients also have the opportunity to connect with other patients from around the world. All patients and their supporters are invited to attend. Please follow the link to learn more about the event and register.
ECD Awareness Week
ECDGA is excited about our first ever Awareness Week scheduled for September 14-19, 2015! This will be an annual opportunity for patients and their supporters to raise awareness in their community and across the globe. An awareness activity could include: fundraising, handing out awareness ribbons to friends and family, posting ECD brochures or flyers where possible in their community, sharing media post on FB, Twitter or RareConnect, etc. We would love to know what your plans are for ECD Awareness Week. This helps to encourage others to join in on the activities or start their own project! Thank you for making a difference in the lives of all that are fighting this disease. Let us not forget, those still searching for a diagnosis need our help. Stay tuned for how to get involved and show support. To learn more or to send in your ideas / plans follow the link to our email.
New Board of Directors Member
We are pleased to introduce our new board member Jean Campbell! Jean served nearly two decades with the National Organization for Rare Disorders (NORD), 10 of those years as Vice President of Development. Well versed in patient advocacy, non-profit governance, development and corporate relations, Jean started JF Campbell Consultants LLC in 2010 servicing the for-profit and non-profit sectors representing the rare disease community. We are confident her knowledge and experience in patient advocacy will serve our community well. Jean has proven to be a valuable board member since her initiation in January 2015.
New Trial at the NIH
In October 2014, the NIH launched a study titled “Dabrafenib and Trametinib in People with BRAF V600E Mutation Positive Lesions in Erdheim Chester Disease”. The National Human Genome Research Institute at the NIH is seeking patients that have been tested positive for the BRAF mutation. This is a therapeutic trial for the use of Dabrafenib and Trametinib. Researchers and patients are hopeful about this new trial.
“I’m actually more optimistic about this clinical trial than I’ve been about any clinical trial.”-Dr. William Gahl, Clinical Director of the National Human Genome Research Institute at the NIH
Follow the link to learn more about this study and eligibility to participate.
The 2015 Challenge
An ECDGA patient, Bengt Thornberg of Sweden, has challenged all registered patients and their families to raise $1000 per family for a total goal of $241,000 by October 2015 (Patient & Family Gathering). We CAN do this with YOUR help! Find out how to create a personal donation page on the Razoo giving site- it’s fast, easy and affective! For more ideas or to provide feedback, please contact us. Follow the link to see the 2015 Challenge progress thermometer.
Last updated: February 6, 2017