You can make a difference as an advocate for INAD families. Advocacy can involve educating the public or medical community about INAD, to participating in social media campaigns. It can also involve taking issues to local, state and federal governments in an effort to pass legislation that will improve the lives of those affected by INAD and other rare and genetic conditions. We encourage our families to advocate and raise awareness at a level comfortable to each of them.
We Need Our Voices to be Heard
Rare Disease Day
Rare Disease Day is an international “grassroots” advocacy day to bring widespread recognition of rare diseases as a global health challenge. It is celebrated annually on the last day of February. Anyone can be involved in Rare Disease Day and there are many ways to participate. The Founders of INADcure Foundation participated this year at Capitol Hill in Washington, DC
“Have the courage to ask for help, the worst thing they can say is no”