Oregon: Rare Disease Council

OregonSenate Health Committee Chair Laurie Monnes Anderson and Representative Health Committee Chair Andrea Salinas

People with rare diseases do not get the support they need in order to get treated for their rare disease. It is important for medical professionals, insurance, and legislators to come together to help ensure all Americans get the medical treatment they need to survive a rare disease.

Petition by
Rico Dence
Hartford, Connecticut

To: OregonSenate Health Committee Chair Laurie Monnes Anderson and Representative Health Committee Chair Andrea Salinas
From: [Your Name]

As your Constituent, would you consider introducing a piece of legislation to establish a rare disease council? 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 affected by a rare disease can receive great treatment and hopefully find a cure.
National Organization for Rare Diseases (NORD) does research on over 1200 rare diseases 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 finding cures for cancer patients and all rare diseases.

The legislation is needed to help victims of rare diseases find the treatment and cures they need. The council will help to steam needed legislation to find cures and treatment needed to save lives. I urge you to introduce legislation to help save the lives of people across our great state.