Postponed Until Further Notice
Funding and resources for rare diseases are almost non-existent.
Even a small donation makes a huge impact.
Donations can be sent by cheque or online. Thank you for your generosity!
We need your help!
Volunteer, internships, and fieldwork positions are now available relating to fundraising, event coordination, social media, research and public relations.
In our search for a cure, we are building a global community of patients, families, researchers, doctors and innovative thinkers to collect and share valuable information about this rare condition.