What’s New?
The January 2018 website update includes the following changes and additions. Thank you for visiting!
- Other recent news can be found in announcements.
- 2017 Newsletter
- Year-End Fundraiser Update
- Rare Disease Day
- 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.