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Advocacy and Activism

This section focuses on news in advocacy and activism for sickle cell disease. Get the latest on actionable legislative actions, state advocacy efforts, local, national, and global campaigns to improve care and the lives of those with SCD. We need your voice. Get involved, sign a petition, use your network, call your house representatives and senators, share your story, and make an impact.

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...

Get the Match Livestream

Get the Match Livestream September 28 1 pm - 4 pm PST (8:00 pm - 11 pm GMT) There is a point in which all of...

The SC Warrior Team is Expanding

Do you love to write?  Are you a social media master?  Do you create amazing graphic designs?  Apply today to become part of the...

No More Lifespans!

Join Tosin in this video to learn why you should disregard the number your doctor gave you about your lifespan.  Be inspired to join...

7th Annual Sickle Cell Disease Therapeutics Conference

The 7th Sickle Cell Disease Therapeutics Conference is a forum to discover the latest advancements and future trends impacting the sickle cell community.  Conference...

2018 SCD Seminar & Hotel Registration

Reserve Your Hotel Room Today! All SCD Warriors who register before August 15th are guaranteed a bed at the fabulous Courtyard by Marriott! That means,...

S.2465, the Sickle Cell Disease Research, Surveillance, Prevention and Treatment Act...

S.2465, the Sickle Cell Disease Research, Surveillance, Prevention and Treatment Act of 2018 In February 2018, the sickle cell community celebrated with the announcement of...
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