Urge Your Representatives to Cosponsor the Rare Disease Advancement, Research, and Education Act

A number of rare diseases cause kidney failure, including Berger’s disease and Alport syndrome. Rare diseases are defined in the United States as affecting less than 200,000 people in the United States. Since the number of kidney patients with rare diseases is low, legislation that assures that these diseases are not excluded from research is needed.

The Rare Disease Advancement, Research, and Education Act—RARE Act—would increase funding for the National Institutes of Health Rare Diseases Clinical Research Network, which is made up of 21 centers of excellence that study rare diseases in an intra-disciplinary manner.  The bill also creates a National Rare Disease or Condition Surveillance System at the Centers for Disease Control and Prevention (CDC) and directs the Agency for Healthcare Research and Quality (AHRQ) to expand its outreach to providers so they can recognize a rare disease. Finally, the bill would require the National Academies of Sciences, Engineering, and Medicine to update its 2010 report entitled, “Rare Diseases and Orphan Products: Accelerating Research and Development,” to gauge where drugs and therapies for rare and orphan diseases stand.

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Please Cosponsor H.R. 5115, the Rare Disease Advancement, Research, and Education Act--RARE Act

Dear [Decision Maker],

As your constituent and someone who has been touched by kidney disease, I'm requesting that you cosponsor H.R. 5115, the Rare Disease Advancement, Research, and Education Act--RARE Act. A number of rare diseases cause kidney failure, including Berger's disease and Alport syndrome. Rare diseases are defined in the United States as affecting less than 200,000 people in the United States. Since the number of kidney patients with rare diseases is low, legislation that assures that these diseases are not excluded from research is needed.

The Rare Disease Advancement, Research, and Education Act--RARE Act--would increase funding for the National Institutes of Health Rare Diseases Clinical Research Network, which is made up of 21 centers of excellence that study rare diseases in an intra-disciplinary manner. The bill also creates a National Rare Disease or Condition Surveillance System at the Centers for Disease Control and Prevention (CDC) and directs the Agency for Healthcare Research and Quality (AHRQ) to expand its outreach to providers so they can recognize a rare disease. Finally, the bill would require the National Academies of Sciences, Engineering, and Medicine to update its 2010 report entitled, "Rare Diseases and Orphan Products: Accelerating Research and Development," to gauge where drugs and therapies for rare and orphan diseases stand.

Please cosponsor the Rare Disease Advancement, Research, and Education Act--RARE Act

Sincerely,
[Your Name]
[Your Address]
[City, State ZIP]