What we do

Activities of the ECD Global Alliance

• Host an annual International ECD Patient and Family Gathering

• Host an annual International ECD Medical Symposium

• Collaborate with ECD Care Centers internationally

• Hold regular online chat sessions to allow those affected by ECD to share information and provide mutual support

• Maintain a website dedicated to ECD

• Provide educational material related to ECD, including a patient brochure and a professional brochure explaining ECD, a flyer that provides general information about ECD, and links to relevant technical papers

• Advocate on behalf of ECD patients to other support organizations, doctors, and lawmakers

• Talk with researchers about ECD and advocate for research into the disease

• Publish a newsletter devoted to stories and information of interest to those affected by ECD

• Engage in social media to increase awareness and provide support via Facebook, Twitter, and Rareconnect

• Fund ECD research through grants

• Provide researchers with a communication mechanism to quickly reach ECD patients