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February 2021
Georgia Rare Disease Day Virtual Event
Georgia Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Georgia legislators and the general public on the challenges faced by rare disease patients and their families. We will provide an update on where Georgia is currently in the legislative process to form a Rare Disease Advisory Council (RDAC) and discuss actions you can take to facilitate the effort to get an RDAC signed into law.
Find out more »Arkansas Rare Disease Day Virtual Event
Arkansas Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Arkansas legislators and the general public on the challenges faced by rare disease patients and their families. We will provide an update on where Arkansas is currently in the legislative process to form a Rare Disease Advisory Council (RDAC) and discuss actions you can take to facilitate the effort to get an RDAC signed into law.
Find out more »University of Michigan Virtual Rare Disease Day Event
We invite you to join Michigan Medicine and the University of Michigan NORD Students for Rare in a 3-day virtual event recognizing Rare Disease Day. The event will highlight patient stories, caregiver stories, and research findings in the fields of Metabolism and Immunology. We hope to see you there!
Find out more »Louisiana Rare Disease Day Virtual Event
Louisiana Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Louisiana 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 Louisiana by providing stakeholders an opportunity to make formal recommendations to state leaders about…
Find out more »University of Michigan Virtual Rare Disease Day Event
We invite you to join Michigan Medicine and the University of Michigan NORD Students for Rare in a 3-day virtual event recognizing Rare Disease Day. The event will highlight patient stories, caregiver stories, and research findings in the fields of Metabolism and Immunology. We hope to see you there!
Find out more »Delaware Rare Disease Day Virtual Event
Delaware Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Delaware 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 Delaware by providing stakeholders an opportunity to make formal recommendations to state leaders about…
Find out more »Texas Rare Disease Day Virtual Event
Texas Rare Action Network, Baylor College of Medicine and Texas Children's Hospital invite you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Texas 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 Texas by providing stakeholders an opportunity…
Find out more »March 2021
Maine Rare Disease Day Virtual Event
Maine Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Maine 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 Maine by providing stakeholders an opportunity to make formal recommendations to state leaders about…
Find out more »Utah Rare Disease Day Virtual Event
Utah Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Utah legislators and the general public on the challenges faced by rare disease patients and their families. We will provide an update on the Utah Rare Disease Advisory Council (RDAC) and discuss actions you can take to help influence your state’s RDAC efforts.
Find out more »New Jersey Rare Disease Day Virtual Event
New Jersey Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate New Jersey legislators and the general public on the challenges faced by rare disease patients and their families. We will provide an update on where New Jersey is currently in the legislative process to form a Rare Disease Advisory Council (RDAC) and discuss actions you can take to facilitate the effort to get an RDAC…
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