You can make a difference as an advocate for INAD families.
The INADcure Foundation recognizes that we are stronger together and we want to empower all of us
to raise awareness and generate action for not only those impacted by INAD, but also for the entire rare disease community.
Advocacy can be anything from educating the public or medical community about INAD or the challenges faced by families
impacted by rare disease, to participating in social media campaigns to raise awareness and ask for meaningful change.
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.
“Have the courage to ask for help, the worst thing they can say is no”
Anil Panwala, Co-Founder INADcure Foundation
Opportunities to Advocate
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 – both as an individual and as a supporter of the INADcure Foundation and the INAD community.
Click here to learn more: Rare Disease Day
Rare Disease Legislative Advocates
Rare Disease Legislative Advocates (RDLA) is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations. RDLA is committed to growing the patient advocacy community and working collectively, thereby amplifying the patient voice to be heard by local, state, and federal policy makers.
Click here to learn more: Rare Disease Legislative Advocates
Rare Across America
One of the events organized by RDLA is Rare Across America. The INADcure Foundation participates in this event which is an opportunity to meet with Members of Congress and/or the Member’s staff. RDLA organizes meetings for rare disease advocates and also helps prepare advocates for their meetings, provides legislative resource materials, and hosts pre-meeting training webinars.
Click here to learn more: Rare Across America