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Tag: Advocacy and Activism

SC Handbook for Parents and Caregivers

Knowledge and Confidence to Tackle SCD Sickle Cell Disease is well known for the pain that it causes. What isn’t widely researched is the emotional...

World Sickle Cell Day is June 19th

June 19th is World Sickle Cell Day! Celebrated all over the world. Join us

SC Community receives Grants from Novartis STEP Program

Five nonprofit organizations to receive up to $250,000 through Novartis STEP Program™ to support sickle cell patient initiatives The Solutions to Empower Patients (STEP)...

6th Annual Sickle Cell Patient & Family Educational Symposium

July 24 - 28, 2019 Plano, TX The Annual Sickle Cell Disease Patient & Family Educational Symposium is the only national sickle cell convention designed, created,...

Comments on Practice Guidelines for SCD

The American Society of Hematology (ASH) is seeking comments on two additional draft clinical practice guidelines on sickle cell disease (SCD): pain and transplantation....

Webinar “What’s New at SCDAA”

SCDC Sickle Cell Data Collection program Register for Webinar "What's New at SCDAA" Wednesday, April 24, 2019 10:00 AM - 11:30 PM PST Register now:  https://attendee.gotowebinar.com/register/1778776015181580301     Presented by Ms. Beverley Francis-Gibson, SCDAA President...

Support the Global Genes Team

Global Genes has formed a running team for the OC Marathon to raise money and awareness for rare disease community activities.  Warriors - join...

FDA Public Meeting – Patient Perspectives on the Impact of Rare...

Registration Open: FDA Public Meeting - Patient Perspectives on the Impact of Rare Diseases: Bridging the Commonalities On Rare Disease Day, FDA announced the Agency will host...

Show Your Rare!

The #ShowYourRare campaign was launched in 2018. The campaign has inspired the Rare Disease Day 2019 poster and videos. Rare diseases affect an estimated 300 million people around the...

Rare Disease Day Countdown!

Hello warriors! We have just over a week until February 28th, which is Rare Disease Day! In the US, a rare disease is defined as...
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