Global Sickle Cell Disease Network

To celebrate #WorldSickleCellAwarenessDay🩸, @SickKidsGlobal's partners in the Community-based SCD Care & Screening capacity building project, Maamobi General & Princess Marie Louise hospitals, hosted community SCD awareness events in Accra, Ghana!🇬🇭 Learn more: tinyurl.com/2bcvkbx6

Today is #WorldSickleCellAwarenessDay🩸! SCD is one of the most common genetic diseases worldwide. To mark this important day, @SickKidsGlobal's @DrOdame led a special global webinar, co-hosted by the Centre & the @WorldCEAlliance, delivering a talk entitled, "Hydroxyurea — Relief for the Few, or Necessity for Many?" With 900+ participants tuning in from around the world, Dr. Odame shared his clinical insights, research findings & key takeaways, including: 🔴 SCD is a lifelong blood disease with systemic effects on organs 🔴 Disease-modifying treatment, rather than just managing "crises," improves the quality of life & survival rate for those with SCD 🔴 Hydroxyurea is a proven effective treatment for SCD — the benefits outweigh the risks 🔴 Barriers must be removed to make hydroxyurea treatment accessible to ALL patients who need it Thanks to everyone who joined the conversation! #SickleCellAwareness #SickleCell #SCD #GlobalChildHealth #SCDAdvocacy

Many pregnant and breastfeeding women cannot be sure that their needed medications are safe for them – inc. for diseases like #SickleCell - because of exclusion of these groups from clinical trials. A new global Task Force aims to accelerate ethical inclusion in research, for safer pregnancies and births. 🔗 bit.ly/4e7Pql8

Today is #SickleCell Awareness Day 🩸 40% more people are living with sickle cell disease today than in 2000. It is a growing health challenge, affecting around 7.7 million people in the world today. This means more health workers – inc. maternity providers - need to know how to manage the disease. Read WHO’s new recommendations on care during pregnancy: bit.ly/446z3AV

Management of sickle cell crises alone is inadequate to achieve best outcomes for patients with sickle cell disease. Patients should ask their providers about hydroxyurea, an effective disease-modifying treatment. @GlobalSCDN @SickKidsGlobal

Today, World Sickle Cell Awareness Day, we should double efforts to surmount the diagnosis barrier in LMICs. Accurate point-of-care tests are available to supplement lab techniques like isoelectric focusing/electrophoresis. Early diagnosis matters! @GlobalSCDN @SickKidsGlobal

Today is World Sickle Cell Awareness Day. Untreated, sickle cell anemia results in > 45 years of healthy life lost. That’s why early diagnosis and hydroxyurea treatment should be the standard of care regardless where patients live in the world.

Today is #WorldSickleCellDay🩸! Join @SickKidsGlobal & @WorldCEAlliance for a special webinar on access to hydroxyurea for people with sickle cell disease. Hear from one of the world’s leading voices on #SickleCellDisease, Dr. Isaac Odame, Hematology Section Head in the Division of Hematology/Oncology at @SickKidsNews & Medical Director of the @GlobalSCDN at the C-GCH, as he discusses "Hydroxyurea: Relief for the Few or Necessity for Many?" 📆 Date: June 19, 2025 ⏰ Time: 9 a.m. EDT 📣 Talk topic: Hydroxyurea: Relief for the Few or Necessity for Many? ➡️ How to register to attend: • Download the WCEA app from the App Store or Google Play • Register under the "Rest of the World" category • Once your profile is set up, search for the event title "Hydroxyurea: Relief for the Few or Necessity for Many?" and join the session #SCD #SickleCellAwareness #GlobalSCDCare

Thanks to all who joined the 5th Global Congress on #SickleCellDisease June 3–6! From powerful conversations to global collaboration, your participation & engagement are helping to drive #SCD care, education, advocacy & research forward.#GlobalSCDCongress2025 #SickleCellAwareness

On the 4th day of the 5th Global Congress on Sickle Cell Disease, we linked up with the First African Sickle Cell Patient to get cured using Gene therapy A beacon of hope to all Sickle Cell Warriors out there.

The 5th Global Congress on Sickle Cell Disease that happened last week was also about linkages and partnerships Among the linkages was the Nortvartis Team and National coordinator of sickle cell Dr. Kiyanga Ministry of Health and VP Journeys By Grace, Ms. Kisha Chempton

Today in Abuja, I had the honour of addressing delegates from over 60 countries at the 5th Global Congress on Sickle Cell Disease @GlobalSCDN. This gathering could not have come at a more critical time. As Nigeria deepens implementation of the National Health Sector Renewal Investment Initiative (#NHSRII) under the Renewed Hope Agenda #RenewedHope of His Excellency President Bola Ahmed Tinubu GCFR @officialABAT, we are focused on repositioning healthcare from the ground up—beginning with the primary care level. Sickle cell disease remains one of the most prevalent yet neglected genetic disorders across the African continent. In Nigeria, thousands of children are born each year with the disease, many of whom die prematurely from preventable complications such as severe anaemia and infection. This is not only a public health challenge—it is a social injustice. Yet, we know that the path to transformation is clear. Interventions such as newborn screening, early diagnosis, routine vaccination, and access to disease-modifying therapies like hydroxyurea can reduce child mortality from sickle cell disease by more than 80 percent. The cost is low, the science is sound, and the tools are available. What we must now ensure is access and scale. In line with our national commitment, Nigeria has begun to expand sickle cell screening and management services across six designated centres of care. A new national guideline for prevention and management has been adopted and updated. We are also partnering with local pharmaceutical manufacturers to provide affordable access to hydroxyurea. Most significantly, I am pleased to announce that the Center of Excellence for Sickle Cell Disease Research and Training in Abuja will now be upgraded to an International Centre of Excellence—serving not just Nigeria, but the West African sub-region and the global community. This is only a beginning. As we strengthen our primary healthcare systems, we must also break the silence and stigma around sickle cell disease, invest in awareness, promote early detection, and bring services closer to the people. The burden of this disease is disproportionately borne by countries like ours, yet the global response remains limited. That must change. I call on subnational governments, African health ministries, research institutions, industry leaders, and development partners to join us—not just in words, but in action. Let us integrate sickle cell disease into national NCD strategies. Let us invest in local manufacturing of essential commodities. Let us back our commitments with resources. Sickle cell disease has been neglected for far too long. In this season of renewed hope, we are choosing to act.

Second Day was about engagement with different partners and organization representatives at the Global congress. Learning different modules on management, treatment, preventive and advocating methods that they use in different countries to combat SCD

This week we sent our Community Engagement Officer Musiimenta Euniky to the 5th Global Congress on Sickle Cell Disease hosted at Abuja Continental Hotel in Abuja Nigeria from 3rd June to 6th June 2025. Quite an honorable experience with an international discussion on SCD

SickleInAfrica will be at the 5th Global Congress on Sickle Cell Disease in Abuja, Nigeria (June 3–6). Our members will be presenting in several sessions. Here are some highlights (more loading..) Attending the congress? We would love to connect! Please come say hi. #GCSCD2025

The Congress provides a unique opportunity to come together to share ideas & drive real progress in the diagnosis, treatment & care of people living with #sicklecelldisease. Don't miss the powerful lineup of plenary sessions being offered. Learn more➡️: tinyurl.com/2ke36h7h

📣The theme for the 5th Global Congress on Sickle Cell Disease is: Working Together to Reduce the Burden of Sickle Cell Disease: Leaving No One Behind. Join #SCD care professionals, researchers & advocates from around the 🌍 — register: tinyurl.com/3pd8bey2 #SCDCongress2025

Have you registered yet? The 5th Global Congress on Sickle Cell Disease is fast approaching — June 3–6 in Abuja, Nigeria. Don’t miss an incredible lineup of experts sharing the latest in #SickleCell research & care➡️: tinyurl.com/2ke36h7h #SCD #SCDCare #SickleCellResearch

The 5th Global Congress on Sickle Cell Disease is happening in Abuja, Nigeria, from June 3–6, 2025! Don’t miss an incredible lineup of experts sharing the latest in #SickleCell research & care. Learn more & register now➡️ tinyurl.com/2ke36h7h #SCD #SCDCare #SickleCellResearch

📣The 5th Global Congress on Sickle Cell Disease is taking place in Abuja, Nigeria, from June 3–6, 2025. Register now to attend! 🗓️Early bird pricing ends on Feb. 28➡️: tinyurl.com/574y6zv7 #SCD #SCDCare #SickleCellAdvocate #SickleCellResearch #SickleCellDisease