URDDAD-foundation

General information

The organization’s mission statement is to eliminate the challenges of rare diseases and ultra-rare diseases by building awareness .And providing support networks and resources to positively impact affected patients and families and to support the families with counselling support and to build a center of excellence for patients and their families
Our objectives are to improve the lives of patients and their families who have been diagnosed with a rare or ultra-rare disease:
Too raise the profile of rare diseases by lobbying government’s and health services and drug manufactures to improve research and development of orphan drugs
The Foundation support’s children, family or friends with rare diseases The foundation understands the fight on a deep personal level and keep in mind the needs of our community at all times
The foundation is committed to ensuring that our programs support our European mission of awareness and outreach .Education, and innovation and technology, research, and to form partnerships with other groups on a pan European basis

The foundation is committed to raising awareness of rare diseases and ultra-rare diseases over 7000 distinct rare diseases exist and approximately 80 percent are caused by faulty genes The National Institutes of Health estimates that 50% of people affected by rare diseases are children, making rare diseases one of the most deadly and debilitating for children worldwide:
The foundation is committed to the small patient populations, collectively, our community is larger than the AIDS and Cancer communities combined and 95% of all rare diseases do not have a single FDA approved drug treatment (Global Gens)