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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
2022 NORD Virtual Rare Disease Day Event
SHOW YOUR STRIPES WITH NORD! Monday, February 28, 2022 1:30 pm – 2:30 pm EST Grab your favorite zebra print shirt or toss on a striped scarf and meet us online for a community gathering marking the 12th annual Rare Disease Day! This one hour event will be packed with entertainment from a star-studded guest lineup and offer a place to connect and chat with other rare community members and allies. Click Here To Register Today
Find out more »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 »UCLA RARE DISEASE DAY 2022
UCLA RARE DISEASE DAY 2022 Friday, February 25, 2022, from 1:00 pm– 3:00 pm PT This free, virtual community event will inform audiences on how industry, academia, and advocacy organizations can work together to develop novel therapies for rare disease patients and understand the emerging challenges to accelerating progress for ever-smaller rare disease markets. Hear from leading experts in rare disease research & patient care from the California Center for Rare Diseases at UCLA. This is a free event but…
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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