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Day 1 | Session 3: INSIGHT Registry; what it is and why we need one?
Manage episode 384901989 series 3530258
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Join Melody Burchett, founder and President of A Cure in Sight, with communications and events coordinator, Hanna Hulick to discuss the INSIGHT Registry.
This is a unique rare disease patient registry.
insight.iamrare.org
The INSIGHT Registry is an online registry for patients with Ocular Melanoma (OM). It will be hosted by the National Organization for Rare Disorders (NORD); an independent non-profit patient advocacy organization dedicated to individuals with rare diseases and the organizations who serve them and as such is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
The registry will collect information from participants, (or their authorized respondents, heretofore referred to collectively as “participants”), who are affected by Ocular Melanoma.
join the registry today: insight.iamrare.org reach out to contact@acureinsight.org for support with the registry.
ANNOUNCEMENTS:
5K SITES ARE OPEN FOR REGISTRATION NEAR YOU! Start your team and bring your community to get involved!
November 11, Los Angeles CA
https://runsignup.com/Race/CA/SantaMonica/LookinForACureLosAngeles
November 19, Scottsdale, AZ
https://runsignup.com/Race/AZ/Scottsdale/LookinForACureArizonaDecember 9, Dallas FTW TX
https://runsignup.com/Race/TX/FortWorth/LookinForACureFortWorth
December 10, Houston, TX
https://runsignup.com/Race/TX/Houston/LookinForACureHouston
January 20, 2024 Orlando FL
https://runsignup.com/Race/FL/Orlando/LookinForACureTampa
January 21, 2024, Miami FL
https://runsignup.com/Race/FL/Miami/LookinForACureMiami
Head to our site to register for a 5K Lookin’ for a Cure near you for the remainder of the year!!
www.lookinforacure.org
Subscribe to the newsletter to stay in the know
Newsletter link
Email contact@acureinsight.org for questions regarding any upcoming events!
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Be sure to follow us on Facebook, Twitter, Linked In, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more!
Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure.
Contribute via PAYPAL OR VENMO or reach out directly to contact@acureinsight.org
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