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Lack of Albinism Registry Hindering Govt Interventions-MOH

Dr. Charles Olaro, the Director of Clinical Services in the Health Ministry, says without a registry, there's little that government can do to help persons living with albinism.

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Government has failed to provide free sunscreen to people living with albinism due to lack of the disease registry, according to the Health Ministry. 

A disease registry is an extensive collection of information or data about a certain disease. It can include demographics of patients, known treatment outcomes and trends of the disease. 

Dr. Charles Olaro, the Director of Clinical Services in the Health Ministry, says without a registry, there's little that government can do to help persons living with albinism.

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Dr. Jackson Orem, the Director Uganda Cancer Institute, says creating a data base for persons living with albinism needs urgent attention.  

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Olive Namutebi, the Executive Director of the Albinism Umbrella, says that they are working with several partners to try and make a registry.  

"Before research was a problem but we are now working with several organisations to carry out some research. We recently completed a study about persons living with Albinism in Eastern Uganda,” she said.  

According to UCI, 70 percent of all the patients that they treat with skin cancer are persons living with albinism. It is estimated that more than two thousand people suffer from skin cancer in the country.

According to the World Health Organisation, it is estimated that one in every 20,000 people worldwide is a person living with albinism. In Uganda, it is estimated that around 15,000 are persons with albinism. 

The biggest challenge cited by albinos in Uganda is the cost of sunscreen. On the open market, a tin of 50ml of sunscreen on average cost 25,000 Shillings.