United to Conquer Sickle Cell Disease

SCDC Update

SCD Coalition Releases SCD Reading Lists

Representation matters—and this is particularly true for people living with sickle cell disease (SCD). To help raise SCD awareness and amplify warriors’ stories, the Sickle Cell Disease Coalition (SCDC) developed a collection of SCD Reading Lists! These lists feature engaging and educational literature on SCD recommended for children, young adults (YA), and adults. Books included in these lists cover an array of genres, including graphic novel, memoir, mystery, romance, contemporary fiction, historical non-fiction, and more. Visit the link below to check out the full lists and share these recommended readings with friends, family, teachers, coaches, and other key community members.

View the full lists here.

ASGCT Releases Educational Resources on Adenovirus-based Vaccine for COVID-19

The American Society of Gene and Cell Therapy (ASGCT) is sharing reliable and unbiased educational resources that explain how the adenovirus-based vaccine for COVID-10 works and why it is safe and effective. This unit of educational resources, along with the previously released unit on the mRNA vaccines, includes a short video, FAQ, and an infographic. Please share these resources broadly to inform, ease fear, and celebrate this accomplishment in the gene therapy field. Access the new unit of educational resources 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.  

CDC and ASH Release Fact Sheets for Community on SCD

The Sickle Cell Data Collection program determines the number of people living with SCD and monitors changes related to their health over time.  The program is pleased to announce:

SCDAA and SCCC Partner on SCD Advocacy

The Sickle Cell Disease Association of America (SCDAA) and the Sickle Cell Community Consortium (SCCC) have partnered to advocate for legislation benefiting people living with SCD and their families. Through this partnership, the organizations will collaborate to develop federal legislative priorities and community-based advocacy meetings, trainings, and programs. Read more here.

Angels in Heaven Memorial Booklet

IASCNAPA is creating a digital memorial booklet for World Sickle Cell Day. If you want to honor a sickle cell warrior who has passed, please send a photo, poem, or memory to 610designsandco@gmail.com  by June 1, 2021.

Check Out the SickleinAfrica YouTube Channel

The SickleinAfrica consortium gathers a network of researchers, clinicians, data scientists, centers, and funders collaborating to advance sickle cell disease (SCD) research and the subsequent translation of this research into African healthcare settings. The SickleinAfrica YouTube channel features an array of webinars and videos that highlight the consortium’s work and explore innovative SCD treatments and tools, such as the Sickle Cell Disease Ontology for basic researchers. As World Sickle Cell Awareness Day (WSCD) approaches, watch and share SickleinAfrica’s 2020 WSCD video to continue spreading SCD awareness and building excitement for the day.

New SCDC Symposia Calendar Accessible to the Public

To enhance event coordination and promotion, the Coalition has published a SCDC Symposia Calendar. This calendar consolidates SCD-related symposia organized by Coalition members and provides helpful logistical and registration information for interested attendees. The SCDC Symposia Calendar is updated regularly and accessible via Google Calendar.

Celebrate World Sickle Cell Awareness Day on June 19th by Joining the Shine The Light Campaign  

In honor of World Sickle Cell Awareness Day on June 19, 2021, the Sickle Cell Disease Association of America (SCDAA) and the Sickle cell Improvement across the North East ReGion through Education (SiNERGe) collaboratively developed the “Shine the Light on Sickle Cell” campaign. This campaign invites everyone to join with friends, family, neighbors, and other community members, as people around the nation and across the globe host and hold local gatherings to shine the light on SCD. Save the date and visit the Shine The Light website to learn about ways you can help spread SCD awareness with your community on June 19th!


Register for Cayenne Wellness Center’s Webinar: The Brain + School + SCD: Bringing Families Together

Cayenne Wellness Center is presenting the last of three mini-seminars on The Brain and SCD on May 22, 2021 at 11:00 a.m. PT. This mini seminar will explore the impact of SCD on one’s education. Learn about the unique educational difficulties for people living with SCD and helpful accommodations to support academic performance. Register here.

Check out the 2nd Annual Abuja Medical Fest

Smile Sickle Cell Foundation and other partners are holding the 2nd annual Abuja Medical Fest on May 22, 2021. This in-person fundraising event in Abuja, Nigeria provides all manners of medical screenings and assessments to the public and offers proceeds to charitable organizations supporting the SCD community. Contact smilesicklecell_foundation@yahoo.com for more information.

Support SCDAA at the 8th Annual Walk with the Stars

SCDAA will hold the eighth annual Walk with the Stars fundraiser, where participating teams and individuals can track their walk, run, dance or movement steps while raising funds to support the association in preventing the complications of sickle cell disease through awareness, education, advocacy and research. Walk with the Stars will kick off May 22 at 10:00 a.m. EST with a Facebook Live event and culminate in a virtual Walk with the Stars celebration July 10 from 9:00 a.m. to 11:00 a.m. EST, recognizing participants’ steps and success. Learn more here.

Register for FSCDR’s 15th Annual SCD Research and Educational Symposium and 44th National SCD Scientific Meeting  

The Foundation for Sickle Cell Disease Research’s (FSCDR) 15th Annual SCD Research and Educational Symposium and 44th National SCD Scientific Meeting will be held virtually from May 27-30, 2021. Attendees can earn up to 22 CME / ANCC / APA credits for attending. Thanks to the support of their sponsors, FSCDR is offering free registration for individuals living with SCD and SCD caregivers. Learn more here.

Register for Upcoming PRDPF! Webinar on SCD: The New Frontier Part 2

Putting Rare Diseases Patients First! (PRDPF!), is hosting a webinar on SCD–The New Frontier to inform individuals living with SCD and their caregivers about curative SCD therapies and opportunities for engagement.  The webinar is scheduled for Friday, May 28, 2021 at 11:00am EST. The webinar is free to the public and may be streamed via Zoom, Facebook Live, or PRDPF!’s YouTube channel. Register to attend here.


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