What’s new in the ECD community?


See a brief overview of what the ECDGA has been up to recently!  The blog page provides highlights and up-to-date news.  Find out about grant awards and deadlines, patient events, new trials, fundraising news, etc.  


Find a list of ECDGA newsletters here.  There are quarterly and annual newsletters for review and information about the accomplishments and successes of volunteers and medical teams.

Press Releases

These articles are created by the ECDGA to help media outlets publish stories about the community easily with factual data about our initiatives.  Community members are encouraged to share these with their local paper or news channels to raise awareness and educate others about this rare disease.

Last updated: December 16, 2021

Contact Us

  • ECD Global Alliance, P.O. Box 775,
    DeRidder, LA 70634 USA

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