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Erdheim-Chester Disease Global Alliance
A Nonprofit 501(c)(3) Organization
P.O. Box 775, DeRidder, LA 70634
"Supporting Those Affected by Erdheim-Chester Disease"
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ECD Global Alliance
April/May Newsletter
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What's Inside
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Registry for Patients with Erdheim-Chester Disease
Open for Enrollment
The
Registry for Patients with Erdheim-Chester Disease is recruiting patients! The registry is a database managed by Memorial Sloan Kettering Cancer Center (MSK) in New York, NY. Once collected by the MSK research team, the database will house the patients' records and tissues collected during biopsies. Consenting patients will participate by completing surveys and giving permission to the MSK team to collect the data needed from their treating physicians directly. For more information about the registry and how to participate, please visit our website. Please note that this is not the same as registering for the ECD Global Alliance membership!
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2018 Orlando Event
Patient & Family Gathering Updates
Need more information about the ECD Patient & Family Gathering? Search our
event page
for a schedule of events, information on lodging, and fun activity ideas in Orlando.
Quick note: The meeting will not be held at a hotel this year, but will be located at the Orlando Regional Medical Center, 52 West Underwood Street, Orlando, FL, 32806. Two hotels, both located near the hospital's meeting location, have rooms available for the event. The Hampton Inn is within walking distance and the Grand Bohemian is a short drive.
Please register as soon as possible to help us prepare accordingly. Early registration fees per guest are $100 and will increase to $200 on July 1st.
Never attended a PFG? View past years' presentations and photos on our event page. Please let us know if you have questions! This is a great way to hear about the latest research and treatment plans from multiple experts. You will also have time to meet and get to know others in the ECD community.
Some of the topics to be discussed this year: Nutrition, Physical Therapy, Drug Management, Treatments Options for ECD, Psychological Aspects, and Drug Trial Information
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Raising awareness is a key activity in helping those affected by ECD. It is extremely important that education and awareness continue in order to support patients fighting ECD and to help those still searching for a correct diagnosis.
Need ideas on how to raise awareness or make a presentation in your community? Let us know!
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RARE Artist Contest
The EveryLife Foundation for Rare Diseases is hosting the 10th annual Rare Artist contest, celebrating the unique talents of the rare disease community.
One of our members, Heike Michaela, has submitted two digital photographs!
Please help her win a gift card (to be donated to the ECDGA) and raise awareness of ECD by voting daily for the following digital art submitted.
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ECDGA President, Kathy Brewer, proudly shares with the
local DeRidder Study Club
about how the Erdheim-Chester Disease community came together to contribute to the tremendous progress in care, treatments, and awareness of this disease. This presentation also resulted in new donors and volunteers to help our cause!
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Jean Campbell, ECDGA Board of Directors, and Jessica Corkran, Executive Director, attended the World Orphan Drug Congress in late April to advocate for the ECD community by networking, collaborating, and learning from workshops on how best to serve the group.
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Fundraising for the ECD Global Alliance
Fundraising is a necessary activity to carry out the mission of the Erdheim-Chester Disease Global Alliance. Fundraising also increases awareness of ECD and encourages support within the community. Simple fundraisers can result in significant success!
In 2015, over the course of two months, an anonymous donor matched donations dollar for dollar, raising $115,000. With that $115,000, the ECDGA was able to fund three separate research grants in 2015. With fundraising, the possibilities are endless and that is synonymous with hope, so we look forward to hearing what you would like to do to help fundraise for ECD! Let us know if you are planning a fundraiser for 2018.
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Website Update
The ECDGA website has been updated, please check out what's new, including the
new chat sessions, medical articles, and more.
Learn More
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EXTRA, EXTRA
Know someone in the film business? Here is some information on an amazing Rare Disease Film Festival they should check out!
Volunteers needed for website reviews, language translations, and prize seekers for upcoming events. Just respond to this email to let us know if you can help!
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