Resource Materials

Finding a solution to your prescription needs can be challenging.  The following list includes prescription drug programs that could possibly help obtain drugs affordably.

Drug Company Website Link
Vemurafenib Genentech Genentech Access
Anakinra Sobi PPARX
n/a Needy Meds Needy Meds
n/a Rx Assistant Program Rx Assistant Programs
n/a Rx Outreach Rx Outreach

The following list includes printable documents created by the ECDGA to assist volunteers, families, and patients when raising awareness about ECD.

Resource Description
ECD Fact Cards These cards give a short description of the disease and also list the website address. These are formatted to print in business card format.
ECD Fact Flyer – NEW Undated, single page overview of ECD.
How-To Guide for Hosting a Fun RunNEW This guide provides step by step instructions to guide someone who has never hosted a fun run before.  It includes helpful information for any fundraiser project!
Letter to Your Doctor Template Did your journey start out with a doctor that was unable to diagnose your ECD?  Write them a letter to give an update and offer education about your disease.
Medical Brochure Raise physician awareness with this brochure. Bring this pamphlet with you to all medical appointments, ECD related or otherwise.
Patient Brochure Share information about this disease and the organization with your friends, family and community.
Proclamation Cover Letter

Proclamation Template

Use these templates to submit a request to your local city or state legislator to request the proclamation of  ECD Awareness Week in 2016.
Shirt Pocket Guide This double sided document is a great fact list to add to your awareness campaign.  This size document fits easily into a man’s shirt pocket, making it easier to hold onto.
Year-End Giving Letter Template – NEW During the holiday season, we encourage members to reach out to their family, friends, and community to consider the ECDGA for their year-end giving.  Use this template to help write a personal letter to your loved ones.

Last updated: March 27, 2017

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

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