Indiana

Indiana Rare Disease Day Virtual Event

Wednesday, February 24, 2021 from 7:00pm-8:30pm EST

Indiana Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Indiana legislators and the general public on the challenges faced by rare disease patients and their families. We will explore how the formation of a Rare Disease Advisory Council (RDAC) could address the needs of those living with a rare disease in Indiana by providing stakeholders an opportunity to make formal recommendations to state leaders about the most important issues they face, including the need for increased research and awareness, knowledgeable health care providers, and timely access to affordable diagnostics, treatments and cures.

Jon Toumey
Indiana State Ambassador
[email protected]

Sunny Ammerman
Indiana Community Engagement Liaison
[email protected]

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COVID-19 Resources & Information

State Resource Page

The Indiana State Department of Health has created this helpful resource website in response to COVID-19.

https://coronavirus.in.gov/

What's Happening Now?

Would you like to volunteer to assist in hosting a local community awareness event? Do you have an opportunity for Indiana’s Rare Action Network to attend your event? Contact the NORD Rare Action team today and learn more. Please check back regularly for news of upcoming events and activities in Indiana.

In order to make meaningful change in the lives of rare disease patients and their families in the state of Indiana, we need you! Become active with the Rare Action Network by joining and utilizing the resources available on this website to take action and create change.

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State Report Card

In this fifth edition of NORD’s “State of the States Report,” we analyze all 50 states and Washington, D.C., on eight issues that impact the rare disease community. Each state has their own individual report card (as seen below), but for more background and an explanation of the grading methodology, please download the full report.