From Regional Patient Advocate Patricia Karani

In Namibia, a new HAE patient was diagnosed. We have been working with the physician to ensure that the patient receives the best possible care with the treatments presently available. 

In Eritrea, a family with HAE has been found, and we are working to find a local physician with whom we engage to assist these patients with better management.

As for Kenya, Rare Disease Day was celebrated by HAE Kenya, being part of a panel of experts who discussed the journey and plight of patients living with rare diseases. I got a chance to talk about HAE and the burden of illness in my life. We had good discussions with representatives from the Ministry of Health, who assured us that they have set up a task force within the Ministry to try and come up with policies that will benefit patients with rare diseases. We also had representatives from KEMRI (Kenya Medical Research Institute), and they too highlighted the importance of researching rare diseases in Kenya. 

I also participated in the KEMRI survey on rare diseases in Kenya. They try to forge out recommendations on rare diseases, more specifically in terms of access to healthcare services.

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