Calling ECD patients who have undergone a kidney transplant
The ECDGA has recently been contacted about a research opportunity for any ECD patient who has undergone a kidney transplant.
If you are an ECD patient who has had a kidney transplant, you have an opportunity to join a study that aims to better understand how ECD impacts the kidneys. This study only requires that you share existing medical files. You will not have to travel or have any additional tests performed. Your participation would have the potential to help further the understanding of ECD.
If you are an ECD patient with a transplanted kidney and wish to participate in this study, please respond back to this email and we will give you the details of how to get involved.
Thank you for your consideration of this opportunity to help us all learn more about ECD. For other trial information visit
ECD Studies &Trials.
Registration fees per guest are $200. We have extended this rate until October 15 when it will increase to $300. This fee helps with catering and material costs for the event. Please contact the organization if this fee prevents you from attending.
Never attended a PFG?
View past years’ presentations and photos on our event page. Please let us know if you have questions! You can also join the conversation among the community on this Facebook event page.
Invite your doctor to the Medical Symposium (Medical Professionals only please)
A Rare Relay for Life in Nashville - Erdheim-Chester Disease
Joe along with 50 other friends, family, and community members, all wearing the ECD Awareness team shirts, took the opportunity to raise a great deal of awareness by informing all that where curious about ECD. Raising awareness is vital to...
The recent #endECD t-shirt campaign reported 58 awareness shirts were sold, with a total of $530 in profit donated to the ECDGA! If you would like to submit a t-shirt design in another language or another style, let us know.
Facebook now includes a new donate button that sends your donations straight to the ECDGA with no fees! Note: They do not currently offer an entry field to leave a name for dedication.
The ECD Global Alliance, Inc. is listed on the Amazon Smile giving website! Simply shop on www.AmazonSmile.com, set your organization to the ECD Global Alliance, Inc., and 0.5% of your purchases will be donated to the ECDGA! This has raised $265 in 2018!
The ECDGA Year-End fundraiser will begin November 27, 2018! This is a great time to host a fundraiser or run a letter campaign with your community, family and friends asking for support.
Mark your calendars for the 2019 event on July 12 in Milan, Italy! Registration coming soon.
