Sickle Cell Disease Coalition
@conquerscd.bsky.social
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📝 59
The Sickle Cell Disease Coalition seeks ideas for our Peer Learning Exchanges! Take a look at past topics and imagine what you could share. Email
[email protected]
with your ideas.
#SickleCell
#SCD
#PeerLearning
1 day ago
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Flash Friday shares what's new, needed, and next in the sickle cell community. SCDC members, send your items to
[email protected]
by May 25.
#SickleCell
#SCDC
#FlashFriday
7 days ago
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Today is Clinical Trials Day—honoring patients, investigators, and teams advancing care. ASH supports every trial stage, from design to training. Discover resources and fuel your next breakthrough here:
https://ow.ly/fRy350Z2rcy
#ClinicalTrialsDay
#Hematology
#ClinicalResearch
9 days ago
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Help us amplify what’s happening across the sickle cell community. The SCDC Update lands in inboxes on the last Friday of the month! We’re looking for news, events, opportunities, and tools to share with our network. Send submissions by May 22 to
[email protected]
9 days ago
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Stigma grows silently for those with SCD. This Mental Health Awareness Month, join SCDAA P.O.W.E.R. ECHO on May 28 to explore mental health in SCD care. Register:
https://ow.ly/AbgP50Z1Sfl
#MentalHealthAwarenessMonth
#SickleCell
#SCD
#MentalHealth
10 days ago
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This #NationalNursesWeek, SCDC celebrates #ThePowerOfNurses in sickle cell disease. On May 20, join the IASCNAPA “Advancing Nursing Excellence in SCD” Congress to deepen knowledge in global wellness, holistic care & shared wisdom. Register:
https://ow.ly/Vqs950YYt5u
#NationalNursesWeek
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Advancing Nursing Excellence in Sickle Cell Disease
https://ow.ly/Vqs950YYt5u
17 days ago
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Join HHS Office of Minority Health for Part 1 of a two-part roundtable on key elements, challenges, and best practices in comprehensive SCD care (including nutrition). 📅 May 14 | 2–3:30 PM ET 🔗 Register here:
https://ow.ly/FsZj50YVb32
#SCD
#HHS
24 days ago
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“Save the date!” We’d love to… but first, we need the dates. We’re building the SCDC spring and summer calendar. Got events, advocacy actions, webinars, or deadlines for the sickle cell community? Email
[email protected]
so we can spread the word.
28 days ago
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April is Medicaid Awareness Month. Medicaid is a lifeline for many people with sickle cell disease, but gaps and barriers remain. Urge your members of Congress to cosponsor the Sickle Cell Disease Comprehensive Care Act:
https://ow.ly/F95s50YN8WG
about 1 month ago
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Flash Friday is coming up, and we want to feature your work! Our members-only SCDC newsletter drops the first Friday of each month—share your news, events, and resources by April 24 to be included. Send submissions to
[email protected]
about 1 month ago
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Registration is still open for the ASH SCD Away Elective Rotation! This 1-month experience gives heme/onc fellows hands-on training in caring for people living with sickle cell disease. Apply by May 1, 2026:
https://ow.ly/C8xc50YN89Q
#SickleCellDisease
#MedEd
#HemeOnc
#ASH
about 1 month ago
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Can AI be trusted for sickle cell disease education? 🤖🩸 Join our Peer Learning Exchange on April 21, 2026 at 10:00 a.m. ET to explore SickleCellPedia as a real-world AI case study. Register:
https://ow.ly/TgQW50YLnLS
#SickleCellDisease
#AIinHealthcare
#SCDCPartner
about 1 month ago
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We’re already in month four, which means you know what’s coming: the SCDC Update hits inboxes the last Friday of the month. Got news, events, opportunities, or resources for the sickle cell community? Send your submissions by April 20 to be included. Email:
[email protected]
about 1 month ago
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Thank you for joining us at the SCD Unified Action Forum! 🎉 If you attended, please take a few minutes to complete our post-event survey. Your feedback will help us improve future convenings for the sickle cell community. Take the survey here:
https://ow.ly/PXA150YJ6EF
#SCDUnifiedActionForum
#SCD
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SCD Unified Action Forum
SCD Unified Action Forum
https://ow.ly/PXA150YJ6EF
about 1 month ago
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We’re a week away from the SC3 Leadership Summit and SCD Unified Action Forum in Atlanta — and we’re coming from Washington, DC! ✈️ We’re excited to join such a diverse group of stakeholders to advance unified action for people living with SCD. Where are you traveling from? ⬇️
about 2 months ago
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Flash Friday submissions are open! ⚡️ Looking for new items to feature in our members-only April Flash Friday newsletter. Have news, events, resources, or opportunities to share? Send them in by April 1 (no April Fools joke 😉). Submit to:
[email protected]
2 months ago
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Planning an event for the sickle cell community? Let’s amplify it. 🔊 Hosting a workshop, webinar, summit, training, or community gathering? We can feature it on the SCDC events calendar to help you reach more stakeholders. Send event details to:
[email protected]
2 months ago
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Now accepting submissions for the March SCDC Update! Have news, events, opportunities, or resources the sickle cell community should know about? Share them so we can help amplify your work in our next newsletter. Send your items or questions to
[email protected]
.
#SickleCell
#SCD
2 months ago
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We’re excited to kick off the SCDC Research & Innovation Subcommittee tomorrow, March 18. We’ll be shaping a new series that will feature priority topics in sickle cell disease research and spotlight the experts driving this work. Want to be part of it? Apply here:
https://ow.ly/KYHk50Ys1Nr
2 months ago
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Headed to Atlanta for the SCD Unified Action Forum (April 11–12)? This is your sign to lock in your travel. Book your flight & hotel by March 24 to secure your spot and make the most of the Forum. Let’s move sickle cell care, research & advocacy forward—together.
#SickleCell
#SCD
#SCDCPartner
2 months ago
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We can’t believe
Sick Cells
Sickle Cell Disease Policy Forum is just a couple of days away! Make sure you’re registered and ready to learn, engage, and advocate. Bring your voice and your commitment to advancing better policies for people living with SCD — See you there!
#SCDCPartner
#PolicyForum
3 months ago
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It's Patient Safety Awareness Week – for the sickle cell community, safety means survival. Use ASH SCD guidelines for safer care:
https://ow.ly/QeSt50Ys15u
#SCDC
#ASH
#Guidelines
#PatientSafety
3 months ago
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We’re excited to co-host the SCD Unified Action Forum with
Sickle Cell Consortium
, April 11–12, 2026, in Atlanta, GA. We’re bringing together SCDC & SC3 members to advance unified action in SCD. SCDC members can also attend the SC3 Leadership Summit at no additional cost.
#SCDCPartner
#SCD
3 months ago
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📬 Have you signed up for the SCDC Update? It’s a great way to stay up to date on the latest sickle cell disease opportunities, resources, and events, and to easily share them with colleagues and others in your network. Join the mailing list today:
https://ow.ly/XHO650YcoLl
3 months ago
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🚨 Our first U.S. Pathways to Care meeting is on March 6! Join U.S. based stakeholders to address barriers and develop practical, community-informed solutions for equitable, high-quality sickle cell care. Apply to join the subcommittee:
https://ow.ly/Wsyf50YcoGq
3 months ago
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Reminder: 📣 Join us for #PeerLearningExchange #4 on the sickle cell disease policy landscape in 2026. Hear from Maia Laing, Chief Policy Officer at @SickCells on the latest regulatory, funding & access trends shaping care and research in the U.S. 🔗
https://ow.ly/9IUm50Yhl5G
3 months ago
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❤️ February is American Heart Month! People living with sickle cell disease (SCD) face unique heart health risks. Learn practical tips to support cardiovascular health here:
https://ow.ly/NeSp50Ycomr
#AmericanHeartMonth
#SickleCellDisease
#HeartHealth
#PatientAdvocacy
3 months ago
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📢 Flash Friday
#3
is coming in March! We’re looking for community news, events, and resources related to sickle cell disease to feature in our next Flash Friday. 🗓️ Submit by Feb 26 📩 Questions? Email
[email protected]
Help us keep the SCD community informed and connected.
3 months ago
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The SCDC is excited to join community members and advocates at the 2026 #SCDPolicyForum, hosted by
Sick Cells
and the
Sickle Cell Consortium
🗓️ March 17–18, 2026 | Virtual Register:
https://ow.ly/wRb150YcnP7
#SCDPolicyForum
#SickleCellDisease
#Advocacy
#SickleCellAwareness
3 months ago
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📣 Join us for #PeerLearningExchange #4 on the sickle cell disease policy landscape in 2026. Hear from Maia Laing, Chief Policy Officer at
Sick Cells
on the latest regulatory, funding & access trends shaping care and research in the U.S. 🔗
https://ow.ly/zvUb50YhkTq
#PeerLearningExchange
#4
3 months ago
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🧬 The FDA is hosting a virtual Rare Disease Day 2026 public meeting on Feb 23. The SCDC will be attending—will you? Let us know how you or your organization are engaging during #RareDiseaseDay or #RareDiseaseWeek. 🔗 Learn more:
https://ow.ly/TNY550YcnmZ
#RareDiseaseDay
3 months ago
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📢 Don’t miss our third Peer Learning Exchange: “From Commitment to Change—Effective Advocacy Through Coalitions & Government Engagement.” Hear Mario Ottiglio, MA, share actionable tips on coalition advocacy and policy engagement. 📅 Tomorrow, Feb 17 🔗 Register:
https://ow.ly/NsPc50Ycnff
3 months ago
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🩸 Today is World Anemia Day 2026! Many confuse sickle cell anemia (HbSS) with sickle cell disease (SCD). Quick tip: HbSS is the most common & severe form of SCD. Learn more here:
https://ow.ly/Sxmi50YcmLF
4 months ago
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👥 Our first SCDC-wide meeting of 2026 is Feb 25! We’ll share highlights from the ASH Annual Meeting and research submissions. Members, we hope to see you there! Not a member? Apply here 👉 :
https://ow.ly/PzMu50Ycmog
#SickleCellDisease
#ResearchCommunity
#SCDC
#ASHAnnualMeeting
4 months ago
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📣 Peer Learning Exchange | Feb 17: Join us for 'From Commitment to Change: Effective Advocacy Through Coalitions' with Mario Ottiglio, MA. 🔗 Register:
https://ow.ly/mi9n50YbVz3
#PeerLearningExchange
#GlobalHealth
#Advocacy
#CoalitionBuilding
#SickleCellDisease
4 months ago
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📣 Peer Learning Exchange | Feb 17: Join us for 'From Commitment to Change: Effective Advocacy Through Coalitions' with Mario Ottiglio, MA. 🔗 Register:
https://ow.ly/5wc650Y6Bu5
#PeerLearningExchange
#GlobalHealth
#Advocacy
#CoalitionBuilding
#SickleCellDisease
4 months ago
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Have an event? Let’s amplify it! Submit your workshops, summits, trainings, or other opportunities to the SCDC calendar and reach more of our community. We’ll help spread the word! 📧 Send details:
[email protected]
#SickleCellDisease
#HealthAwareness
#Collaboration
#AmplifySCDC
4 months ago
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Today is Maternal Health Awareness Day! ACOG's theme "Holding Ground on Maternal Health" highlights our commitment to preventing maternal deaths. Check out WHO's first global guideline for SCD pregnancy care:
https://ow.ly/7zl850XYhfe
#MaternalHealth
#SCD
4 months ago
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January is National Blood Donor Month! Check out this PSA by our former Co-Chairs, Mapillar and Jeff.
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4 months ago
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Task force alumni — this one’s for you. Have you submitted your selections for one of our three new subcommittees? If not, email us at coordinator@scdcoalitionorg to confirm your SCD membership and get connected.
4 months ago
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📢 Call for SCDC Update submissions! Missed the first newsletter of the month? You can submit items for the next edition until Jan 26. We welcome community news, events, opportunities, and resources related to sickle cell disease. Not sure if your item fits? Email us:
[email protected]
4 months ago
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Attention SCDC Members! ASH is still accepting public comments on the new guidelines on dosing and monitoring of HU for SCD. Send your comments using the link below!
add a skeleton here at some point
4 months ago
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Today marks the start of National Blood Donor Month! 🩸 Celebrate by exploring @ADRP’s Resource Library for tools and resources that support diverse blood donation efforts. Learn more:
https://ow.ly/HTwB50XGXWG
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Resource Library - ADRP: The Association for Blood Donor Professionals
Search Resources Browse by Topic Discover Your Perfect Resource Unlock a wealth of knowledge by searching ADRP's comprehensive library using filters like resource type, topic, and date to quickly find the exact information you need. Resource Type Topic Results per page Sort By
https://ow.ly/HTwB50XGXWG
5 months ago
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🎄✨ Happy Holidays from the SCDC team! ✨🎄 Thank you to our community, partners, and supporters for your courage and dedication this year. We’ll see you in 2026! ❤️
#SickleCell
#SCDCPartner
#ConquerSCD
#SCDC
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5 months ago
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The holidays are busy, and for those with sickle cell, self-care matters just as much as celebration. Check out this helpful guide from our #SCDCPartner, As One Foundation:
https://ow.ly/2MWP50XGWHC
#SCDCPartner
#SickleCell
#SelfCare
#HolidayHealth
#SCDC
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7 Tips to Manage Holiday Stress with Sickle Cell - As One Foundation
The holidays are upon us . This is the time of year we spend celebrating with friends and/or family. Cooking that delicious holiday meal, shopping for those special gifts, traveling […]
https://ow.ly/2MWP50XGWHC
5 months ago
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🎉 From milestones to moments that made an impact this year, relive the highlights that made 2025 unforgettable for the SCDC community. Dive in now and celebrate with us! 🚀
#SCDCWrapped
#YearInReview
#SCDCPartner
#SCD
#Coalition
5 months ago
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Last SCDC-Wide Meeting of the Year! Join us to hear updates and upcoming changes. Make sure your organization is represented. Questions:
[email protected]
6 months ago
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Have you seen "Sacred Spaces: Healing Through Art" at The Sanctuary yet? 🎨 Explore visual storytelling that inspires reflection and connection. Created on behalf of our #SCDCPartner, Cayenne Wellness Center. 📅 Weekends | 10 AM – 6 PM | Glendale, CA Get tickets:
https://ow.ly/g1rf50XGTjS
#SCDCPartner
6 months ago
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Missed our November SCD Coalition Peer Learning Exchange with CHAI? The full session is now on YouTube. Catch up and explore how data-driven insights, policy alignment, and catalytic financing are transforming access to care. 👉
https://ow.ly/PteR50XGYsH
6 months ago
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reposted by
Sickle Cell Disease Coalition
Rimas Orentas
6 months ago
Michelle Weeks presenting a Master Class in DNA sequencing at
#ASH25
of over 4,000
#sicklecelldisease
cases showing clonal hematopoiesis starts at infancy and increases to 7.1% by age 11
@danafarber.bsky.social
drivers include TP53, ATM, PPMID, CHEK2
@ascaa.bsky.social
@conquerscd.bsky.social
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