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RareAction Network > Events > NORD Sponsored Rare Disease Day Event

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February 2021
Delaware Rare Disease Day Virtual Event
Delaware RareAction 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 the…
Find out more »Texas Rare Disease Day Virtual Event
Texas RareAction 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 to…
Find out more »March 2021
Maine Rare Disease Day Virtual Event
Maine RareAction 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 the…
Find out more »Utah Rare Disease Day Virtual Event
Utah RareAction 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 RareAction 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 signed…
Find out more »February 2022
Ohio Rare Disease Day Virtual Event
Ohio Rare Disease Day Virtual Event Thursday, February 24, 2022 10:00 am – 12:00 pm EST The Ohio Rare Action Network and the Connor B. Judge Foundation invite you to join patients, families, caregivers and other rare disease community members at this important virtual event on Thursday, February 24th at 10:00am EST to educate the general public on the challenges faced by rare disease patients and their families. Click Here To Register Today
Find out more »Connecticut Rare Disease Day Virtual Event
Connecticut Rare Disease Day Virtual Event Friday, February 25, 2022 9:00 am – 10:30 am EST Please join patients, families, caregivers, and other rare disease advocates as we raise awareness and celebrate the rare disease community in Connecticut. This 90-minute virtual event will feature guest speakers from the rare community including patients, caregivers, organizational representatives, medical professionals and state legislators. Speakers will share the importance of getting a Rare Disease Advisory Council bill passed in Connecticut and ways you can…
Find out more »Florida Rare Disease Day Virtual Event
Florida Rare Disease Day Virtual Event Friday, February 25, 2022 10:30 am – 11:30 am EST Please join patients, families, caregivers, and other rare disease advocates as we raise awareness and celebrate the rare disease community in Florida. This virtual event will feature guest speakers from the rare community including patients, caregivers, organizational representatives, medical professionals and state legislators. Speakers will share updates from the Rare Disease Advisory Council in Floriday and ways you can get involved! Click Here To…
Find out more »New York Rare Disease Day Virtual Event
New York Rare Disease Day Virtual Event Sunday, February 27, 2022 6:00 pm – 7:30 pm EST Please join patients, families, caregivers, and other rare disease advocates as we raise awareness and celebrate the rare disease community in New York. Our goal is to educate the general public on the challenges faced by rare disease patients and their families. Program from 6:00 pm - 7:00 pm followed by a virtual networking cocktail hour from 7:00 pm - 7:30 pm. Click…
Find out more »March 2022
Delaware Rare Disease Day Virtual Event
Delaware Rare Disease Day Virtual Event Saturday, March 19, 2022 12:00 pm – 1:30 pm EST Please join patients, families, caregivers, and other rare disease advocates as we raise awareness and celebrate the rare disease community in Delaware. Click Here To Register Today
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