Advocacy and Activism Archives - Page 3 of 10

Black Health Matters

Tosin details how to use the website, brand new initiatives, and great strides for the future.

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 stress that families go through due to the unpredictable episodes of pain, hospitalizations, risk of death, and more. Treatment options are few, and curative therapies like bone marrow transplants and…

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) Program™ continues to help nonprofit organizations deliver new solutions to address unmet patient needs This year’s focus is on addressing some of the most pressing issues in the sickle cell disease…

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, and hosted by the sickle cell patient and family community. Each year the meeting is hosted by a partnership of sickle cell community-based organizations, patients, and advisors. We are…

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. All members of the public are invited to review the draft recommendations and submit comments, including physicians and researchers, allied professionals, industry and insurance company representatives, patients, caregivers, and general members…

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 and CEO, and Dr. Biree Andemariam, SCDAA Chief Medical Officer. Tracking California’s Sickle Cell Data Collection for California program invites you to attend a webinar, “What’s New at the…

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 the team to run, help volunteer, or come and cheer on the team as they run. Either way we would love to have you involved! For more information check out the…

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…

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 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…

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 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…