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February 2021

Tennessee Rare Disease Day Virtual Event

February 26 @ 12:00 pm - 1:00 pm

Tennessee Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Tennessee legislators and the general public on the challenges faced by rare disease patients and their families. We will provide an update on the Tennessee Rare Disease Advisory Council (RDAC) and discuss actions you can take to help influence your state’s RDAC efforts.

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Illinois Rare Disease Day Virtual Event

February 26 @ 12:00 pm - 2:00 pm

Illinois Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Illinois legislators and the general public on the challenges faced by rare disease patients and their families. We will provide an update on the Illinois Rare Disease Advisory Council (RDAC) and discuss actions you can take to help influence your state’s RDAC efforts.

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Georgia Rare Disease Day Virtual Event

February 26 @ 1:00 pm - 2:30 pm

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.

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Arkansas Rare Disease Day Virtual Event

February 27 @ 10:00 am - 11:30 am

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.

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Louisiana Rare Disease Day Virtual Event

February 27 @ 3:00 pm - 4:30 pm

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…

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Delaware Rare Disease Day Virtual Event

February 28 @ 1:00 pm - 2:30 pm

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…

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Texas Rare Disease Day Virtual Event

February 28 @ 2:00 pm - 3:30 pm

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…

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March 2021

Maine Rare Disease Day Virtual Event

March 1 @ 12:00 pm - 1:30 pm

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

March 2 @ 12:00 pm - 1:30 pm

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

March 4 @ 10:00 am - 12:00 pm

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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