Sickle Cell Association of Uganda

"Sickle Cell Disease does not belong in the closet!"

Warriors of Alui Village Pakwach gathered for a sharing experience meeting

One of the greatest Ugandans who ever lived was Philly Bongole Lutaya who in his own words gave Aids “a face". Taking on his philosophy is Ruth Nankanja a sickle cell warrior, mother, teacher and Hero.

Ruth soon realized that people would rather sweep sickle cell under the carpet and forget about it... she knew only too well the stigma and discrimination faced by people with sickle cell in Uganda. Yet once armed with scientific facts as to the cause of sickle cell disease, Ruth committed herself to change this state of affairs joining hands with others.

Registration No.: INDP21545725NB
Our Association is a non-profit organization dedicated to serving the local Sickle Cell disease community in Uganda.

Our sickle cell disease
counselors
are on call 24/7
contact us here

Sickle Cell Association of Uganda is now one of the grass roots organization representing the interests of Sickle Cell patients and their care givers in Uganda. We strive to change the perception that the majority of the population has in Uganda about the disease - that those who have this disease are worthless people in society, worthy of stigmatizing and discriminating against. Through awareness raising, counselling and education we strive to improve the lives of these families.

Vision Statement
"A Sickle Cell Free Uganda"

Mission Statement
“Creating awareness and early testing of the sickle cell disease while ensuring a healthy life for those suffering from the disease”

Core Values or guiding principles

Reverence for God
Transparency
Care
Excellence
Dedication
Service

Sickle Cell in Uganda

It is estimated that 20,000 babies are born each year with the disease of whom 80% die before celebrating their fifth birthday.
The Bamba people in the south west of Uganda carry 45% of the gene which is the highest trait frequency ever registered in the world.
Through SAUs advocacy and lobbying, Cincinnati Children's Research Foundation and the government of Uganda managed to do a country wide Sickle Cell Study. "Burden of sickle cell trait and disease in the Uganda Sickle Surveillance Study (US3): a cross-sectional study" by Prof. Grace Ndeezi, Dr. Kiyaga Charles and others
The Sickle cell Clinic in Mulago (National Referral and teaching hospital) has over 7000 patients registered with it and on average sees 200 patients 5 days a week. Sadly this is this Sickle cell clinic is a day care Centre operating from Monday to Friday yet Sickle cell patients get attacks at any time.
Fortunately most of the referral hospitals and Heath Center IVs in Uganda now have started up Sickle Cell Clinics though these are not accessible to those in rural areas

Join hands to make a difference in these children's lives for the majority of the sufferers are young.

JULY 2024 SAU will hold a Joint Activity with Partner OPDs; UNAC, EFPA, BISOU, TTAU, SIA, BISOU, ADPHA. As we fight for recognition and inclusion in the disability fraternity.

Theme: "Invisible Disabilities made Visible"

Related links:
International Alliance of Patients' Organizations
patientsorganizations.org

Please get in touch here to offer comments, join our mailing list, help in any way or to make a donation.