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 us living with SCD will consider undergoing a bone marrow transplant to see if it can help...
View ArticleRare 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 one that affects a minor population of less than 200,000 people. Sickle...
View ArticleShow 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 world. There are...
View ArticleFDA 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 –...
View ArticleSupport 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 the team to run, help volunteer, or come and cheer on the...
View ArticleWebinar “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:...
View ArticleComments 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. All members of the public are...
View Article6th 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, and hosted by the sickle cell...
View ArticleSC 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) Program™ continues to help...
View ArticleSC 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 stress that families go through due to the...
View ArticleNew Survey Finds Emergency Care is Not Ideal for SC Patients
Most people with sickle cell disease (SCD) in the U.S. are satisfied with their primary care practitioners, but less so with emergency care given at a hospital to manage severe pain, according to a...
View ArticleNICHQ Webinar: Appointment Attendance
Increasing Appointment Attendance: A Vital Opportunity to Improve Health Outcomes for Those Living with Sickle Cell Diseases August 10, 2020, 3:30 – 4:30 p.m. ET To make health outcomes better,...
View ArticleCOVID Sickle Cell Warriors Impact Study
Covid Sickle Cell Warriors Hello Warriors, We hope you are doing well. 2020 has been a wowza of a year. The COVID pandemic, shutdown, and fallout affected us all. This issue has affected different...
View ArticleAMPI Rare Disease Video
AMPI (Alliance to Protect Medical Innovation) created this video. It is to inform legislators of the impact that our country’s various forms of investment in rare disease research has. APMI Mission...
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Livestream Registration
Annual Sickle Cell Disease Therapeutics Conference Livestream: September 15, 2020 Let the countdown begin! Sickle Cell Warriors, Inc. (SCW) is excited to partner with Global Blood Therapeutics (GBT) to...
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Advancing the Response to COVID-19
A Virtual Symposium Hosted by the HHS Office of Minority Health Advancing the Response to Covid-19 September 17, 2020 | 12:00 PM to 6:00 PM ET The Response to Covid-19 meeting features several things....
View ArticleEmergency Care not Ideal for SC Patients
Want to kjnow more about emergency care for SC warriors? Check out this great article that just came out on sickle cell disease. It’s saying what us warriors have complained about for years; the...
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Pre-Registration for LiveStream
Annual Sickle Cell Disease Therapeutics Conference Livestream holds on September 15, 2020 Let the registration for Livestream countdown begin! Sickle Cell Warriors, Inc. (SCW) is excited to partner...
View ArticleRegister for SCDTC LiveStream
Register for the Annual Sickle Cell Disease Therapeutics Conference (SCDTC Livestream) Sickle Cell Warriors, Inc. (SCW) and Global Blood Therapeutics (GBT) hosts the SCDTC Livestream this September...
View ArticleSurvey: Draft Fact Sheets on SCD Therapies
The Sickle Cell Disease Coalition (SCDC), is developing fact sheets on sickle cell disease (SCD) therapies for the community and would appreciate your help reviewing the draft resources. As...
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