New ECD Care Center at Stanford University in California
Stanford Histiocytosis Program at Stanford Health Care
The Erdheim-Chester Disease Global Alliance welcomes the Stanford Histiocytosis Program at Stanford Health Care as the newest ECD Emerging Care Center. Beth A. Martin, MD, an adult hematologist-oncologist, will lead the Stanford care center team of specialists who are interested in treating ECD patients with the most up-to-date care available.
Contact information:
Stanford University
269 Campus Drive, CCSR 1155
Stanford, CA 94305-5156
Need more information about the Patient & Family Gathering (PFG)? Search our event page for presentation topics, a schedule of events, information on lodging, and fun activities in Orlando.
Please register as soon as possible to help the planning team prepare accordingly. Registration fees per guest are $200 and will increase to $300 on October 1 until the event date, November 16, 2018. Register Now
Never attended a PFG? View past years' presentations and photos on our event page. Please let us know if you have questions! Or hop onto our Facebook event page to join the conversation.
Invite your doctor to the Medical Symposium. (Medical professionals only please.) Here are printable and digital flyers to help inform your care team of this event:
Raising awareness is a key activity in helping those affected by ECD. It is extremely important that education and awareness increase and continue in order to support patients fighting ECD and those still searching for a correct diagnosis.
Read more about the recent awareness efforts in the press releases linked below!
Dr. Mark Heaney, from Columbia University Medical Center in New York, presented an ECD Grand Round held in June at Houston Methodist Hospital. Read more.
Dr. Ronald Go, with the Mayo Clinic, also presented a Grand Round in July at the University of Miami. Read more.
Need ideas on how to raise awareness or make a presentation in your community? Let us know!
ECD Awareness Week is only ONE month away!
Get ready to spread the word about Erdheim-Chester Disease September 10 - 15, 2018!
Pictured right: Mohammad Chowdury
Fundraising for the ECD Global Alliance
Giving is receiving! Contribute to discovering a cure for ECD. You can make a difference in the lives of ECD patients around the world by giving 500+ families a chance at a better life with more research funding and ongoing support.
Need help? Check out new ideas and resources for your next fundraiser here: Fundraising for ECD.
Recent fundraiser news! An ECD patient recently shared his personal story online with a request for contributions to support the ECDGA. Congrats to Mohammad Chowdury for making his goal of $5,000 in one month!
Great rare resources come to those that partner with Global Genes! Checkout their RARE TOOLKITS™
Navigating Health Insurance for tips and answers to your insurance questions.
Volunteers needed! Please respond to this email to let us know if you can help with the following projects.
ECD Awareness Week campaign planning! Do you have graphic or marketing skills to contribute to this important activity?
ECDGA uses a WordPress-managed website, we are searching for experienced volunteers to help with updates.
