Rare disease copay Assistance
A rare disease is defined as one that affects fewer than 200, 000 Americans. Nearly 7, 000 rare diseases impact the lives of almost 30 million Americans. Here at BFS, a number of these rare diseases are very familiar to us and to our patient community. PROSE treatment has helped so many of our patients who have diseases classified as rare, including:
- Autoimmune blistering diseases
- Corneal dystrophies
- Ectodermal dysplasias
- Familial dysautonomia
- Graft vs. host disease
- Sjögren’s syndrome
- Stevens-Johnson Syndrome
In recognition of on February 28, we wanted to share with you some support and informational resources you might not know about and highlight ways for you to get involved in raising awareness of rare diseases and their impact on patients and families.
Thirty years ago, the was approved by Congress and signed by President Ronald Reagan. This important piece of legislation led the way towards increased development of treatments and recognition for rare diseases. Up until that point, funds and research for new medical treatments focused almost exclusively on illnesses that affected only large populations. Leading patient advocates who fought for this legislation subsequently founded . This nonprofit organization is a coalition of health organizations dedicated to assist those with rare diseases and the organizations who serve them. This group provides education, advocacy, research, and service. A wealth of information for patients is available on their website, including:
- Disease-specific information
- Patient support organizations by condition
- Financial assistance resources
- Interactive online communities
- Patient assistance and physician database
The of the National Institutes of Health (NIH) is another excellent resource for patients with rare diseases. Here you’ll find links to research studies, clinical trials, and updated legislation, in addition to disease information and patient support organizations. is a consortia working together to promote accessibility to information and treatment as well as awareness. Check with this group for current clinical trials and advocacy group activities. You can also look to our own BFS patient support organizations list for disease-specific support resources.
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