MUTU SICKLE CELL INITIATIVE UGANDA

NON -GOVERNMENTAL ORGANIZATION LEADING THE FIGHT AGAINST SICKLECELL IN UGANDA
WE ARE BUILDING A SICKLECELL FREE WORLD
GULU | UGANDA

[MUTU SICKLE CELL INITIATIVE UGANDA @MUTUSICKLECELL]

We are taking Sickle Cell awareness into schools because every child deserves to learn in an environment free from stigma and discrimination.

Through MUTU Sicklecell Initiative Uganda, we are empowering students and teachers with knowledge about sickle cell disease.
#SickleCell

[UEO Sickle Cell @UEOSickleCell]

A water bottle on a desk shouldn't be a battle. 🎒 Section 504 is federal law, and the Dept of Education's 2024 fact sheet names water, restroom and rest breaks, make-up work and modified PE for kids with sickle cell. Need a 504 plan? DM us.
https://t.co/sSk6hXPo9B #SickleCell

[MUTU SICKLE CELL INITIATIVE UGANDA @MUTUSICKLECELL]

Happy Teachers’ Day to all our incredible teachers!

For learners living with Sickle Cell Disease, an informed and compassionate teacher can make all the difference.

we celebrate you as important partners in creating safe, inclusive and stigma-free schools.

Thank you for

[Sickle Cell Society @SickleCellUK]

October is Black History Month.

This year's theme: Honouring Our Communities.

Ours was built by parents, nurses, volunteers and donors. This month we're honouring them.

#BlackHistoryMonth #HonouringOurCommunities

[MUTU SICKLE CELL INITIATIVE UGANDA @MUTUSICKLECELL]

We are proud of our Director, ACIBO FIONA MARY, for being invited to Radio Pacis to share her journey, inspire others and speak about purpose, resilience and hope.

At MUTU SICKLECELL INITIATIVE UGANDA, we believe every story can inspire someone to keep going.

[FSCDR Foundation for Sickle Cell Disease Research @FundSickleCell]

Dr. Oyedeji will serve as the 2027 Scientific Chair at the 21st Annual Sickle Cell Disease Research and Educational Symposium & 50th National Sickle Cell Disease Scientific Meeting. 

Her work explores an important and growing area of sickle cell disease care: aging.

Supported by grants and awards from the National Institutes of Health, the American Society of Hematology, and leading aging research organizations, Dr. Oyedeji is helping advance a new frontier focused on long-term function, quality of life, and healthy aging for adults living with sickle cell disease.

This work helps expand the conversation beyond crisis care and toward lifelong care that supports Sickle Cell Warriors across every stage of life.

#SickleCellDisease #SickleCellResearch #SickleCellCare #Hematology #FSCDR

[MUTU SICKLE CELL INITIATIVE UGANDA @MUTUSICKLECELL]

102 years living with sickle cell disease.

One life. Countless challenges. Extraordinary resilience.

His story is a powerful reminder to everyone living with sickle cell that there can still be hope, purpose and many chapters ahead.

Diagnosis shouldn’t define ur life !!!

[Sickle Cell Society @SickleCellUK]

⏰ 2 DAYS TO GO

The APPG on Sickle Cell and Thalassaemia’s Call for Evidence closes 30 September.

Your experiences and expertise can help inform its inquiry into improving sickle cell and thalassaemia services.

Find out more via our website.

#SickleCell #Thalassaemia #APPG

[Sickle Cell Society @SickleCellUK]

Teachers, support staff and educators are invited to an NHS England webinar on 29 September on new school resources for sickle cell. Join to find out more, explore the resources and ask questions. Register for the webinar here: https://t.co/W3lEZoSE8y. #SickleCellAwarenessMonth

[MUTU SICKLE CELL INITIATIVE UGANDA @MUTUSICKLECELL]

Our Director, ACIBO FIONA MARY, was invited to a radio station to speak and inspire.

At Mutu Sicklecell Initiative Uganda, we believe that every conversation is an opportunity to create awareness, challenge stigma and remind people that sickle cell care goes beyond the hospital.

[MUTU SICKLE CELL INITIATIVE UGANDA @MUTUSICKLECELL]

Care doesn’t end at the hospital door. ❤️
People living with sickle cell need support beyond treatment—emotionally, socially, financially and in their communities.

Care Beyond the Hospital Walls.
Mutu Sicklecell Initiative Uganda

#SickleCell #CareBeyondTheHospital #MutuSickle

[MUTU SICKLE CELL INITIATIVE UGANDA @MUTUSICKLECELL]

Living with sickle cell disease does not end at the hospital.

After discharge, many face psychological, social and financial challenges that can be just as difficult. Sickle cell care must look beyond the hospital and support the person through life beyond the crisis. 💙

[MUTU SICKLE CELL INITIATIVE UGANDA @MUTUSICKLECELL]

At the 3rd Global Sickle Cell Disease Conference, our Director, ACIBO FIONA MARY, highlighted an often overlooked reality: care does end at the hospital.
She focused on the , social and financial support needed , living with sickle cell requires care beyond the hospital walls.

[FSCDR Foundation for Sickle Cell Disease Research @FundSickleCell]

📚SCD Weekly Practice Update

Lapses in clinic appointment attendance in young children with sickle cell disease.

A study published in the Journal of Sickle Cell Disease examined how often young children with sickle cell disease experienced prolonged gaps in clinic attendance and what factors were associated with those lapses.

🔍 Study Highlights

Researchers reviewed clinic attendance through age 6 for 396 children with sickle cell disease who had been seen at Children’s Healthcare of Atlanta before age 1.

💡Key findings included:

160 of 396 children (40.4%) experienced at least one lapse in attendance, defined as more than 365 days between SCD clinic visits.

Among those with a lapse, 34% had their last clinic visit before age 1, and 57% before age 2.

Lapsed attendance was associated with non-SCA genotype, later initial clinic attendance, prior no-show appointments, and, in relevant subgroups, not receiving hydroxyurea by age 2 or TCD screening by age 3.

These were observational associations and do not establish causation.

💡 Why It Matters

Regular SCD follow-up can provide opportunities for disease education, preventive care, screening, treatment monitoring, and supportive services.

This single-site retrospective study cannot determine the clinical consequences of each lapse or which interventions are most effective in preventing prolonged gaps in care.

Current guidance recommends early specialty care, annual TCD screening for eligible children ages 2–16, and offering hydroxyurea beginning at 9 months for children with HbSS or HbSβ⁰-thalassemia.

💭 Discussion

What strategies can healthcare teams use to prevent prolonged gaps in SCD clinic attendance?

How can care teams identify children and families who may need additional support staying connected to specialty care?

Share your perspective — your insights can help strengthen continuity of care for children living with sickle cell disease.

Source: Journal of Sickle Cell Disease, Volume 3, Issue 1, 2026 — Grace Kalmus, MPH; Amy Tang, MD; Peter Lane, MD; Beatrice Gee, MD

#SickleCellDisease #SCDResearch #PatientCare #SickleCellCare #JournalOfSickleCellDisease #PediatricCare #Hydroxyurea

[MUTU SICKLE CELL INITIATIVE UGANDA @MUTUSICKLECELL]

We are proud to have had our Director, ACIBO FIONA MARY, represent Uganda 🇺🇬 at the 3rd Global Sickle Cell Disease Conference in Nairobi, held from 1st–3rd September 2026.

A valuable opportunity to share Uganda’s voice and strengthen global conversations on sickle cell care

[MUTU SICKLE CELL INITIATIVE UGANDA @MUTUSICKLECELL]

September is Sickle Cell Awareness Month.

This month, we raise awareness, challenge stigma, promote early testing, and stand with everyone affected by sickle cell disease.

Know your status. Know the facts. Share the knowledge.

#SickleCellAwarenessMonth #SickleCell #Awarenes

[MUTU SICKLE CELL INITIATIVE UGANDA @MUTUSICKLECELL]

At Kasubi Ame Primary School, MUTU SICKLECELL INITIATIVE UGANDA, in partnership with Miss Tourism Uganda Northern Region, sensitized 1,600 children about Sickle Cell Disease. 🩸❤️

Educating today, creating a more informed generation tomorrow.
SickleCellAwareness
MUTUSickleCell

[MUTU SICKLE CELL INITIATIVE UGANDA @MUTUSICKLECELL]

Hello Incase you haven’t voted yet please do……Link in Bio ….. Thank you for your support 🙏

[MUTU SICKLE CELL INITIATIVE UGANDA @MUTUSICKLECELL]

We’re proud to announce that our Director, ACIBO FIONA MARY, and MUTU SICKLECELL INITIATIVE UGANDA have been nominated for the Sickle Cell Award. 🩸❤️

Kindly vote for us and help amplify the cause. 🙏🏾

🔗 Link in our bio. https://t.co/wS5pziubO0

[MUTU SICKLE CELL INITIATIVE UGANDA @MUTUSICKLECELL]

We are honored to be nominated for the Sickle Cell Award. 🩸❤️

We humbly ask for your vote and support as we continue advocating for better care and support for people affected by sickle cell.

Please vote for MUTU SICKLECELL INITIATIVE UGANDA. Every vote counts! 🙏🏾