From Regional Patient Advocate Patricia Karani

Every year patients living with HAE celebrate life and hope on (and/or around) the annual HAE awareness day. This year HAE Kenya participated in the 1st Stakeholders Workshop for Rare Diseases in Kenya. KEMRI, Cambridge Africa, and Rare Disease International supported Rare Disorders Kenya and started a Call-to-Action Campaign on rare diseases in Kenya. The agenda was to pave the way for rare diseases in the country. The Ministry of Health has put together a Technical Workforce Group for rare diseases in Kenya, which spells a lot of hope for patients with rare diseases. We highlighted challenges and ways to mitigate these challenges as I represented HAE and thus HAE Kenya. Indeed, this was a happy hae day :-) for patients in Kenya as rare diseases finally are getting recognition in the country.

The HAE Zimbabwe team of doctors has embarked on a patient identity campaign to ensure that suspected HAE patients receive free medical consultation as they do their medical workup to provide proper diagnosis of patients. Dr. Careen, our contact doctor, is spearheading this campaign which has seen a lot of response from the general public.

Finally, I am happy to report that HAE patients in Sudan now have access to correct prophylactic medication and also access to an HAE knowledgeable doctor.

>> Meet the Regional Patient Advocates