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
Individuals with Dup15q need access to affordable, adequate, and accessible health care coverage. The Alliance is working to improve the lives of Dup15q families by focusing on federal and state policies in such areas as: Medicaid Section 1115 Waivers; the Affordable Care Act; SSI/SSDI; Section 1332 Waivers; and, Medicaid, Medicare and Private Health Insurance Coverage.
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
Many rare diseases, including Dup15q Syndrome, face hurdles when it comes to developing therapies. The Alliance seeks to support policies that promote the research and regulatory environment for treatments, especially as it relates to seizures. One critical step in this area is to ensure adequate funding of the National Institute of Health (NIH)
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.