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SCDC Update


SCDC Released New Fact Sheets on Crizanlizumab, L-gluatmine, & Voxelotor 

The Sickle Cell Disease Coalition (SCDC) recently released SCD Therapy Fact Sheets to offer high-quality, vetted information on SCD treatments approved for use in the U.S. by the U.S. Food & Drug Administration (FDA): Crizanlizumab, L-gluatmine, and Voxelotor. The fact sheets are written at a secondary reading-level and are designed to help people living with SCD and their caregivers explore treatment options with their health care team. Access the fact sheets here.

SCD in America Public Awareness Video

To help spread SCD awareness, Duke University Adult Sickle Cell Program volunteer, Jackob Bower, produced this 3-minute animated video. This video introduces sickle cell to the general public, breaks down the disparities between SCD and cystic fibrosis, and empowers advocacy through blood donation, education, and funding. Help spread SCD awareness by sharing this impactful video widely. Watch the video here.

It’s the Way That You Say It – Time to Listen to SCD Health Literacy Initiative

Pathways to Trust is a non-profit dedicated to developing communication training and education to providers and people living with rare diseases. Pathways to Trust’s Time to Listen to SCD initiative improves the patient experience by training both patients and healthcare providers in effective communication. This program addresses unconscious racial bias in providers, historical and modern barriers faced by people living with SCD for trainees, and health literacy tools for warriors. Learn more about the program here.

ASH Accepting Abstract Submissions for 63rd Annual Meeting

The American Society of Hematology (ASH) is hosting its 63rd ASH Annual Meeting and Exposition from December 11 to 14, 2021. This year the Annual Meeting will be offered both virtually and in-person in Atlanta, Georgia. Oral and poster abstracts for presentation during the meeting are being accepted until Tuesday, August 3, 2021.

New Be the Match Webpage “The Experience: What You Need to Know About SCD - No Matter Who You Are” 

Be The Match created a webpage to share warriors’ stories, spread SCD awareness, and encourage activism. The webpage shares the perspectives of people affected by SCD and covers the basics of sickle cell, daily life with the disease, and barriers faced by warriors and caregivers alike. Access the page here.

Be The Match Clinical Trials Review Committee Opportunity  

The Be The Match Clinical Trials Search and Support (CTSS) program is planning to expand its website to begin featuring certain clinical trials. To vet and select clinical trials for inclusion on the website, the CTSS program is assembling a review committee of research and clinical trial experts, patients, and caregivers. Individuals interested in participating on the review committee should complete this interest form and reach out to contact@ctsearchsupport.org with any questions. 

SCD Partners Advocate for Congressional Hearing on National Academies’ SCD Report 

Sick Cells, along with close to 40 other sickle cell partner groups, sent a letter to the leadership of the U.S. House of Representative, Senate, and Congressional Committees requesting an annual Congressional oversight hearing on the 2020 National Academies of Sciences, Engineering, and Medicine (NASEM) report – Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action.  Sick Cells and other groups will continue to amplify this request throughout the coming months, and other SCD advocates are welcome to share the letter and request in their policy initiatives. Access the letter here.

IASCNAPA Scholarship for Students Living with Sickle Cell

The International Association of Sickle Cell Nurses and Professional Associates, Inc. (IASCNAPA) is offering scholarships to assist individuals living with SCD attend an institution of higher learning in the United States. Applicants for IASCNAPA’s $1,500 scholarships must be enrolled in, or have been accepted by, a recognized and accredited post- secondary school, such as a college, university, trade school, or other institution of higher learning. Curriculum choice, age, gender, race, ethnic background, religion, and political affiliation will not be used in evaluating applications. A total of four $1,500 scholarships will be awarded. Interested parties may download the application at www.iascnapa.org.  

Read New Publications on SCD

Several articles were published in the past few weeks exploring many issues that impact the SCD community – discrimination, challenges in transitioning from pediatric to adult care, health disparities, etc. Check out these recent publications to stay up to date with some of the latest SCD-related news and initiatives:

UPCOMING SCD EVENTS

NIH Workshop on Approaches to Effective Therapeutic Pain Management for People with SCD 

The National Institutes of Health (NIH) is convening a workshop to explore critical gaps and research challenges as well as brainstorm potential solutions for this understudied pain condition in individuals with SCD. The two-day event, led by the National Center for Complementary and Integrative Health (NCCIH) and the National Heart, Lung, and Blood Institute (NHLBI), will take place July 21 to 22, from 11:30 am to 5:30pm EST. Register in advance here.

SCFG Stress Management Workshops

The Sickle Cell Foundation of Georgia, inc. (SCFG) is holding monthly stress management workshops for the SCD community. These workshops are not exclusive to people living with SCD, and anyone interested in participating is welcome. Registration information for the two sessions is below:

  • Adult Session (18+ years):
  • Youth Session (Children and Teens 17 or younger):

Sick Cells Marqus Valentine Celebration of Life Blood Drive

In honor of Sick Cells Co-Founder, Marqus Valentine, Sick Cells is hosting its 2nd annual Celebration of Life Blood Drive in partnership with Versiti Blood Center on July 24, 2021 from 10:00am to 3:00pm CT. The blood drive will take place at the Lisle Public Library parking lot with donations benefiting Edwards Hospital, Marqus’s home hospital in Lisle, Illinois. Walk-ins are welcome, but scheduling an appointment is highly encouraged. If you are not in the area, but you are interested in donating blood, consider finding a blood donation event near you. Click hereto learn more.

Save the Date: NHLBI Annual SCD Research Meetings 

The National Heart, Lung, and Blood Institute’s (NHBLI) Division of Blood Disorder Research (DBDR) is hosting its annual SCD research meetings from August 16 to 18, 2021. This year’s scientific meetings will be held virtually via Zoom. Registration is available here and additional information will be released soon.

Sick Cells Coverage for SCD Summit

Sick Cells is holding the 2021 Coverage for SCD Summit virtually on August 31, 2021 from 12:00pm to 4:00pm EST. This summit provides a collaborative forum to discuss the changing landscape of healthcare coverage for SCD. This meeting will convene payers, providers, pharmaceutical manufacturers, patient groups, researchers, care teams, and policymakers to discuss ways to tackle the complexities of coverage and access to SCD treatments and care. Sick Cells will share ideas on the latest strategies to measure value, improve patient outcomes, and better navigate healthcare costs. Learn more here.

SCD & COVID-19 INFORMATION AND RESOURCES

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