Rare Disease Support Resources and Rare Disease Day 2013

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

    Janice M. Epstein recognizing Rare Disease Day 2/28/13

  • Corneal dystrophies
  • Ectodermal dysplasias
  • Familial dysautonomia
  • Graft vs. host disease
  • Keratoconus
  • Sjögren’s syndrome
  • Stevens-Johnson Syndrome

In recognition of National Rare Disease Day 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 Orphan Drug Act 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 The National Organization for Rare Disorders (NORD). 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 Office of Rare Disease Research 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. The Rare Diseases Clinical Research Network (RDCRN) 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.

Join in recognizing and promoting awareness of rare diseases next week on National Rare Disease Day:  February 28. This day is about recognizing the common challenges and experiences faced by patients with rare diseases and their families. You can get involved by:

  • Sharing your personal story with local media
  • Writing to your government representatives and let them know the importance of rare disease recognition
  • Promote Rare Disease Day through social networking
  • Participate in the Handprints Across America gallery by submitting a photo of you holding a printout of the Rare Diseases logo

Have you found other helpful resources for rare diseases that impact our BFS community? Do you know of any Rare Disease Day events that you’d like to publicize? Please share them here with us.

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