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Past Events › NORD Sponsored Rare Disease Day Event

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February 2021

New York Rare Disease Day Virtual Event

February 25, 2021 @ 6:30 pm - 8:00 pm

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

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South Carolina Rare Disease Day Virtual Event

February 26, 2021 @ 9:00 am - 10:00 am

South Carolina RareAction Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate South Carolina legislators and the general public on the challenges faced by rare disease patients and their families. We will provide an update on where South Carolina 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…

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Connecticut Rare Disease Day Virtual Event

February 26, 2021 @ 9:00 am - 10:30 am

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

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Florida Rare Disease Day Virtual Event

February 26, 2021 @ 10:00 am - 11:00 am

Florida RareAction Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Florida legislators and the general public on the challenges faced by rare disease patients and their families. We will provide an update on where Florida 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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Minnesota Rare Disease Day Virtual Event

February 26, 2021 @ 11:30 am - 3:30 pm

Telehealth in Rare Disease Clinical Practice and Research: The Silver Lining Now and Beyond COVID-19” Keynotes: Susan Berry, MD, and Bobby Patrick 11:30 A.M. – 12 P.M. EXHIBITORS 12 P.M. – 2:30 P.M. FORMAL PROGRAM 2:30 P.M. – 3:30 P.M. RARE ACTION NETWORK (RAN) BREAKOUT SESSION Rare disease advocates are invited to participate in a breakout session hosted by the MN RareAction Network following the formal program. For more information contact Maria Null at [email protected]

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Tennessee Rare Disease Day Virtual Event

February 26, 2021 @ 12:00 pm - 1:00 pm

Tennessee RareAction 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, 2021 @ 12:00 pm - 2:00 pm

Illinois RareAction 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, 2021 @ 1:00 pm - 2:30 pm

Georgia RareAction 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, 2021 @ 10:00 am - 11:30 am

Arkansas RareAction 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, 2021 @ 3:00 pm - 4:30 pm

Louisiana RareAction 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 the…

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