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  ​Rare Disease Council​​

"A rare disease council will help to ensure people to get the treatment and cure they need"

Rico Dence
Founder Team Up Cancer

  
Why should a rare disease council be created?

In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people a year.  Rare diseases do not get the attention they need.  When a disease is common, the disease becomes easier to treat for there is a larger demand to find a cure.

People with rare diseases find it difficult to rally the population to advocate for treatment and cures.   A rare disease council is needed to help ensure all individuals effected by a rare disease can receive great treatment and hopefully find a cure. 
National Organization for Rare Diseases (NORD) dose research on over 1200 rare disease and cancer falls into a percentage of different types of rare diseases.  Cancer is one piece of the rare disease pie.  Since certain types of cancer fall into the rare disease category.  Team Up Cancer finds it necessary to ask legislators to establish a rare disease council.  A rare disease council will make a difference in treating and find cures for cancer patients and all rare diseases. 

Could you write a letter to your state legislator to encourage them to introduce a bill to establish rare disease council.  Click on your state flag to go you’re your state page and click on rare disease council to access a sample letter. 
 
A rare disease council will work to assist those with rare disease get the proper treatment and cure they need.

The rare disease council with compromise of the following members.
Two physicians affiliated with schools of medicine and experience researching, diagnosing, or treatin
 rare diseases

  • A physician who holds a doctor of osteopathy degree, who is active in researching, diagnosing, or treating rare diseases;

  • Two medical researchers from either academic research institutions or medical research organizations in this state who have received federal or foundation grant funding for rare disease research

  • A registered nurse or advanced practice registered nurse licensed and practicing 28 in this state with experience treating rare diseases

  • A pharmacist practicing in a hospital in this state which has a designated 30 orphan disease center

  • Professor in Pharmacy

  • One individual representing the rare disease community

  •  A member representing rare disease foundation

  • Representative from a rare disease center

  • The chairperson of the drug utilization review board, or the chairperson's 41 designee, who shall serve as an ex officio, nonvoting member of the advisory council

  • If possible, a social worker who works with rare disease patients. 
  

Write to your state legislator to encourage them to establish a rare disease council 

Alabama State Legislature

Click on the flag to see what legislation Team Up Cancer Priority for Alabama.   You can send a letter to encourage the both committee chairs to introduce legislation.  

Alabama State Health Commiteer Chair  Jim McClendon [email protected]
  
Alabama Representative Health Committee Chair Paul W. Lee [email protected]