What’s New?

The January 2018 website update includes the following changes and additions.  Thank you for visiting!

• View the event photos from the 2017 ECD Patient & Family Gathering.

• The 2017 Medical Symposium photos and presentation slides are now available.

• Check out new stories featuring ECD patients and families: The Fresh Faces Project Stands With ECD Survivors: These Are Their Stories and Caitlyn Captures Hope.

• Read the press release regarding the recent ECD Research Grant Awarded for 2017. See all press releases.

• Other recent news can be found in announcements.
  • 2017 Newsletter
  • Year-End Fundraiser Update
  • Rare Disease Day

• New chat session summaries have been added for 2017.

• New members have been added to Member Locations.

• Twelve new medical journal articles have been added to the 2017 list.

• General and caregiver resources have been updated to assist in daily care, travel assistance, and medication access and affordability.
• Drug appeal letters have been added to Filing Payer Appeals to assist you and your physician with approval of coverage for medication and care.

• A printable ECD Studies & Trials Guide is available to assist patients and physicians in learning about current trials for ECD patients.