34 meetings on Capitol Hill. 13 SCDAA member organizations in D.C. Two days of incredible impact 🫶
Thank you to everyone who joined us last week for our 2026 Advocacy Days. Your participation allows us to truly make a difference for individuals with sickle cell disease and their caregivers.
#BeASickleCellAdvocate #SickleCellMatters
Save the date to help the Sickle Cell Disease Association of America, Inc. (SCDAA) drive change and enjoy a day out on the green!
⛳️ 2nd Annual SCDAA Golf Classic
📅 September 11, 2026
📍 Douglasville, GA
🕗️ Check in at 8 a.m.
🏌️ Shotgun start at 9 a.m.
This year, our signature golf tournament will offer an unforgettable afternoon of community, purpose and play. Whether you’re teeing off with a foursome or attending as a supporter, we hope you'll join us to make an impact on and off the course in support of SCDAA's mission.
Learn more and join us ➡️ /event/scdaa-golf-classic-2026
#SickleCellMatters
📰 SCDAA Chief Medical Officer Dr. Edward Donnell Ivy recently spoke with The Baltimore Banner about the promise of gene therapy and the many barriers to accessing treatment. The article shares the story of Jessica Ceja, a 41-year-old mother of three who is the first to receive gene therapy in the state of Maryland.
Read now at the link in bio.
#SickleCell #SickleCellAwareness #SickleCellWarrior #SickleCellDisease #GeneTherapy
📅 P.O.W.E.R. ECHO Training date change‼️
Please note that the P.O.W.E.R. ECHO Training session that was previously scheduled for May 14 will now be held on May 28 at 12 p.m. ET. Jolene Swain, MSW, will present on "Why Mental Health Matters." Don't miss this free opportunity to develop your community health worker skills!
🔗 in bio to register!
#SickleCellMatters #CommunityHealthWorker #CHW #SickleCell #SickleCellAwareness
Register today! The National Heart, Lung, and Blood Institute (NHLBI) and the Sickle Cell Disease Association of America, Inc. (SCDAA) will be hosting “Research That Heals: Partnering with Patients to Transform SCD Care” from June 25-26, 2026. During this 1.5-day hybrid community forum, participants will discuss and develop solutions to enhance care and improve the quality of life for children and adults living with sickle cell disease.
The event is free and open to the public. Attendees can join in-person or virtually.
🔗 in bio to register.
#SickleCell #SickleCellAwareness #SickleCellWarrior #SickleCellMatters
The 2026 SCDAA National Abstract Competition is officially open! 🙌
Calling all researchers, community-based organizations, physicians, nurses, social workers and beyond! Your sickle cell research could be presented at the SCDAA Annual National Convention in October. Abstract topics include:
▪️ Public Health Policy
▪️ Community-Based Research
▪️ Basic and Translational Research
▪️ Clinical Research
▪️ Psychosocial Research
▪️ Gene Therapy Hematopoietic Stem Cell Transplant
▪️ SCD Global Health
▪️ Sickle Cell Trait
📆 SUBMISSION DEADLINE: June 22, 2026, 11:59 p.m. PST
🔗 in bio to learn more.
The SCDAA Annual National Convention will be held October 15-17 in Concord, North Carolina.
#SickleCell #Abstracts #Research #SickleCellAwareness #SickleCellWarrior
Are you an individual with sickle cell planning the next step in your education? Check out this scholarship opportunity! 📖 🎓️
Pfizer's Sickle Cell Scholarship Program began in 2024 to provide financial support to students living with sickle cell. The goal of this program is to empower individuals to pursue their academic goals and alleviate some of the financial burden of education. Scholarship winners are selected based on a combination of academic achievement, letters of recommendation and a personal essay. Applications are open through May 29.
Learn more and apply at the link in bio.
#SickleCellMatters #Scholarship #SickleCellAwareness #SickleCell
📰 Breaking News! In an announcement, Novo Nordisk shared that Etavopivat is the first in a new class of drugs to meet both co-primary endpoints in the phase 3 HIBISCUS trial, substantially reducing vaso-occlusive crisis events and improving hemoglobin response in sickle cell disease.
SCDAA is pleased to hear this news. We will continue to monitor these developments and look forward to learning more about the results of this study.
Read more at the 🔗 in bio.
#SickleCellDisease #SickleCell #SickleCellWarrior #SickleCellAwareness
Our final 2025 SCDAA Masterclass - Sickle Cell in the Media: Scene & Heard (Hosted by Agios Cheat Codes) - is now live! 🎉
🎙️ Recorded live at the 2025 SCDAA Convention in Chicago, this special Masterclass dives into how sickle cell disease is portrayed in film, TV and beyond.
From blockbuster films to powerful documentaries, our panelists (patients, advocates and filmmakers) unpack how storytelling can change minds, challenge stigma and build connection.
💬 Featuring voices from the sickle cell community, this is one conversation you don’t want to miss.
🔗 in bio to watch the recording!
#SickleCell #SickleCellDisease #SickleCellWarrior #sicklecellmatters
📅 Mark your calendar: The SCDAA 2026 National Abstract Competition opens on May 1!
Do you want a chance to present your work at the SCDAA Annual National Convention in October? Gather your research together for the 2026 abstract competition! We encourage researchers, community-based organizations, physicians, nurses, social workers or anyone working on behalf of people living with SCD and their families to submit their work.
Topics include:
▪️ Public Health Policy
▪️ Basic and Translational Research
▪️ Clinical Research
▪️ SCD Global Health
▪️ Community-based Research
▪️ Psychosocial Research
▪️ Sickle Cell Trait
▪️ Gene Therapy and Hematopoietic Stem Cell Transplant
“Best Abstract” in each category, including trainees, will be announced at the Gala on the Friday evening of convention.
Learn more about convention at the 🔗 in bio.
#SickleCellMatters
We are excited to share that three community-based organizations have recently joined SCDAA! Please help us welcome the Louvenia D. Barksdale Sickle Cell Anemia Foundation, The Riley Foundation for Sickle Cell Disease and the Sickle Cell Association of Kentuckiana to our team! This addition expands our national reach into Kentucky, and we are excited to see how these partnerships make an impact.
P.S. - have you checked out our redesigned SCDAA Member Finder on the new website yet? This updated layout makes it easier than ever to find your local SCDAA member organization. Try it out today at the 🔗 in bio.
#SickleCell #SickleCellAwareness #SickleCellWarrior #SickleCellMatters #SickleCellStrong
Our convention theme is finally here! 🤩 💮
You may know that the iconic dogwood is North Carolina's state flower, but did you know that it is also a symbol of hope and new beginnings? Our 54th Annual National Convention theme – HOPE: An Era of Healing Optimism, Perseverance and Excellence – pays tribute to our host state and recognizes our community's transition into a new era of sickle cell care.
Stay tuned for more information about registration and abstract submissions, but in the meantime – don't forget to mark your calendar for Oct. 15-17! 📅
#SCDAA2026 #SickleCellMatters
