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Children With Special Health Needs
February 28 is Rare Disease Day , an opportunity for rare disease patient organizations throughout the world and their partners to join forces to promote awareness for rare diseases and the millions of people affected by them.
Rare diseases are life-threatening or chronically debilitating diseases. Due to the low prevalence of each disease, medical expertise is rare, knowledge is scarce, access to appropriate care is inadequate, and research is limited. Very few cures exist. While each disease is rare, collectively they affect more than 60 million people in Europe and the US.
Of the known rare diseases, 80% have identified genetic origins while others are the result of infections (viral or bacterial), allergies and environmental causes, or are degenerative and proliferative.
Half of all rare diseases affect children. Despite their great overall number, rare disease patients are orphans of health systems, often denied diagnosis, treatment, and the benefits of research.
For information on rare diseases, visit:
- National Organization of Rare Disorders
- The Genetics and Rare Disease Information Center
- A new rare disease and orphan drug center at the Jackson Laboratory in Bar Harbor
A list of resources (pdf*) is available on the website for The Foundation for Children with Atypical HUS