Join the ECD Global Alliance
Thank you for considering registering with our organization. The ECDGA members are a community of people that come together to fight this disease one day at a time.
“Alone we are rare. Together we are strong.” – National Organization of Rare Disorders (NORD)
Why join the ECD Global Alliance?
- Empowerment: You don’t have to be a victim. You can make a difference.
- Meet Other People: Cut through the isolation and make new friends.
- Find the Latest Treatment Information: New treatments, tricks and information available from the organization and its members.
- Have Fun: Be around people who “get it” and find ways to incorporate what you love into helping find a cure.
- Gain New Skills: Volunteer opportunities are limitless.
- Set an Example: Show others what can be done and how hard work helps to “manage problems”.
- Get Access to Experts: Access to ECD experts is available through the organization.
- Help Others: “Be the change you want to see in the world.”
- Be Part of Something Bigger than Yourself: Experience the power of community.
- Eliminate a Challenge in your Life: Find a way to make your life and other’s lives easier.
The ECDGA Needs You
- Community has a stronger voice.
- Allows ECDGA to more accurately report # of diagnosed patients.
- Provides researchers with access to more patients which gives them more opportunities to make meaningful breakthroughs.
Please complete the following form to be added to our confidential patient information and email list. Thank you for joining!
Last updated: December 2, 2015