The Dup15q Alliance strives to improve the lives of those living with dup15q syndrome and their families. This includes being active and up-to-date on governmental activities that can affect the every days lives of those with dup15q which includes access to therapies, access to treatments, access to medications, insurance, etc
The Alliance is developing an Advocacy Committee headed by two of our Dup15q Alliance Board Members. The committee will send out newsletters and keep the community aware of any governmental issues that could affect our families.
Advocacy can be as simple as calling or writing to our various state representatives to let them know that we want them to support types of legislation that affect our families. As a group, our Dup15q community can advocate and encourage our US representatives, both House and Senate, to join the Rare Disease Caucus. The Rare Disease Caucus caucus works to advance legislation and education regarding specialized and uncommon health issues and diseases, while also promoting patient advocacy. The caucus works closely with the Rare Disease Legislative Advocates group.
Our voice matters!
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The Dup15q Alliance’s Governmental Advocacy Committee seeks to provide information to Alliance members with regard to important regulatory and legislative issues at both the state and federal levels that may have ramifications on the Dup15q community. It further seeks to educate members on how they may advocate for positive change. This Committee shall identify, consider, and develop Alliance positions on long-term policy issues, and serve as a resource for legislators and their aides. This is a non-partisan committee that does not endorse any political candidate or party.