Advocacy and Activism Archives - Page 4 of 10

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

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 a public meeting – “Patient Perspectives on the Impact of Rare Diseases: Bridging the Commonalities” on April 29, 2019. The purpose of the meeting is to obtain patients’ and caregivers’ perspectives on the impacts […]

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Show Your Rare!

Advocacy and Activism / SC Warrior

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 world. There are over 6000 different diseases. So rare’s not so rare after all. Support the rare disease community by showing your rare. With your help, we can raise awareness

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Rare Disease Day Countdown!

Advocacy and Activism, Living with Sickle Cell, Newest Features, SC News and Research, Uncategorized / SC Warrior

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 one that affects a minor population of less than 200,000 people. Sickle cell disease falls under the collective umbrella of Rare Diseases, so its another great opportunity to spread the

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Get the Match Livestream

Advocacy and Activism, Living with Sickle Cell, SC News and Research / Brooke Pillifant

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 us living with SCD will consider undergoing a bone marrow transplant to see if it can help our condition. Although there have been success stories, it’s important to educate

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The SC Warrior Team is Expanding

Advocacy and Activism, Living with Sickle Cell, Tosin’s Corner / Brooke Pillifant

Our 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 Sickle Cell Warrior’s team! The SCW Team is expanding to include: SOCIAL MEDIA CONTENT CREATORS We are looking for 7 social media content creators for our team

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No More Lifespans!

Advocacy and Activism, Living with Sickle Cell, SC News and Research, Videos / Brooke Pillifant

Join Tosin in this video. Learn to disregard the number your doctor gave you about your lifespan. Join her in saying, “No more lifespans!”

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7th Annual Sickle Cell Disease Therapeutics Conference

Advocacy and Activism, Living with Sickle Cell, SC News and Research / Brooke Pillifant

The 7th Sickle Cell Disease Therapeutics Conference is a meeting to find the latest news and trends in the SC world. Also, people will hear from new industry leaders, patients, physicians, CBOs and biotech companies. For more information about the day, email scdconference@gmail.com Apart from this, click here to register. Hear from the President and

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SCD Seminar & Hotel Registration 2018

Advocacy and Activism, Living with Sickle Cell, SC News and Research / Brooke Pillifant

Reserve Your Hotel Room Today for SCD Seminar! All SCD Warriors who register before August 15th are guaranteed a bed at the fabulous Courtyard by Marriott! That means , for $25 the SCD Warrior gets: A bus ride to Sacramento from one of 5 routes to the SCD Seminar To stay four nights at one

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S.2465, the Sickle Cell Disease Research, Surveillance, Prevention and Treatment Act of 2018

Advocacy and Activism, Living with Sickle Cell / Brooke Pillifant

S 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 two legislative victories in Congress. First, the U.S. House of Representatives passed H.R. 2410 on February 26, 2018, the Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act. Then

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GBT’s Phase 3 HOPE study Results

Advocacy and Activism, Living with Sickle Cell, SC News and Research / Brooke Pillifant

GBT Announces Positive Top-line Data from Part A of the Phase 3 HOPE Study of Voxelotor in Sickle Cell Disease Primary Endpoint Achieved; 58 Percent of Patients on Voxelotor Dosed with 1500 mg at Week 12 Exceeded 1 g/dL Increase in Hemoglobin Versus 9 Percent of Placebo (p<0.0001) Company Met with FDA on June 25

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