The Dup15q Alliance advocates for policy changes to improve the lives of individuals living with Dup15q Syndrome at the federal and state levels. Here are the areas that we believe are the most critical to our community.
ACCESS TO HEALTH CARE
ACCESS TO NOVEL MEDICATIONS & THERAPIES
Individuals with Dup15q may need access to drugs and/or therapies that are currently under development. The Alliance seeks to support policies that help our members in such areas as: supporting innovative gene therapies; supporting the Orphan Drug Act and its tax credit; protecting FDA standards for safe drugs; and, supporting rare disease clinical trials.
ADVANCING RARE DISEASE RESEARCH
ACCESS TO AFFORDABLE MEDICATIONS
Individuals with dup15q frequently require access to existing and new drugs that they can’t afford. The Alliance seeks to support policies that address the affordability of these medications, such as legislation that promotes the use of generic drugs and addresses federal drug pricing.