"Sickle cell does not belong in the closet!" 

Picture

One of the greatest Ugandans who ever lived was Philly Bongoley Lutaya who in his own words gave Aids “a face". Taking on his philosophy is Ruth Nankanja a sickle cell patient. 

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 Nankanja committed herself, a number of other patients together with several health workers in order to change this state of affairs. 

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 patients 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, worth stigmatizing and discriminating against. Through 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


​EVENTS
Sickle Cell in Uganda
  • The available data, compiled  in the early 1970’s, shows that trait frequency in Uganda is 20% of the population. That is, sixty six million people are at a risk of having a child with sickle cell disease.
  • It is estimated that 33,000 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.
  • There is inadequate data concerning Sickle cell disease due to lack of funds for research. Nothing is known despite the many deaths that are seen daily.
  • 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 the only Sickle cell clinic and it is a day care centre operating from Monday to Friday yet Sickle cell patients get attacks at any time. 

Join hands to make a difference in these children's lives for the majority of the sufferers are young. 
Currently, there are a number of Sickle Cell Clinics in Uganda, unfortunately most of them are located in Kampala and most of our people in the rural areas who are so affected cannot access them due to the current economic situation in the country due to the Covid-19 Pandemic. People in these rural areas need our intervention, please do not give up on them, help wherever you can. 
21st SEPTEMBER 2021
is Joint Activity Day with Partner OPDs; UNAC, EFPA, BISOU, TTAU, SIA, BISOU, MADIPHA. As we fight for recognition and inclusion in the disability fraternity.

Theme: "I am here, listen to me, recognize me and Include me. Don't leave me behind."
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.

Copyright © Sickle cell Association of Uganda