I organized the first HAE doctors’ training in Ghana with the collaboration of the Rare Disease Ghana initiative. It was overwhelmingly attended by 40 doctors and clinicians alike. It was a good interactive session with Dr. Priya Bowry giving a lengthy and comprehensive presentation on the clinical approach to angioedema and HAE with good case studies. Professor Konrad Bork presented treatment options in the case of availability and non-availability of modern treatment. He also presented research that has been done on danazol, fresh frozen plasma and other treatments around the globe.

I was nominated as a speaker for the Africa Health Agenda International Conference (AHAIC) 2021 organized by AMREF Health Africa and officially opened by the President of the Republic of Kenya. The conference theme was “Decade of Action: Driving Momentum to achieve Universal Health Coverage in Africa”. It attracted 3,000 participants from 98 countries across Africa and beyond. I shared my journey to diagnosis and challenges that I have faced and continue to meet in the struggle to get rare diseases like HAE covered under Kenya’s national health medical cover.

To celebrate the 10th anniversary of hae day :-) HAE Kenya created a video showcasing the burden of illness for a patient living with HAE and the difficulties an HAE patient faces at the workplace as well as in her social life.

We have held our first fruitful discussions with a focused team formed in Tanzania that comprises five medical doctors wishing to participate in creating awareness. We agreed to work on conducting HAE training soon. We have translated some awareness material into Swahili, which is widely spoken in Tanzania, and this will help raise more awareness.

I have established contact with the Botswana Organization for Rare Disease (BORDIS) founder Eda Selebasto, and we have discussed the current situation in the health sector in the country. We have also started conversations on the best way to create awareness.

I have been introduced to Dr. Martina Kawome, who is actively involved in supporting rare disease patients in Zimbabwe. She is ready and willing to create awareness through health care professionals.

Rare Disease Lesotho has linked me to a doctor contact to consider how we could initiate the HAE discussion amongst health care professionals.

I have been able to find a new contact with Rose Okoma, who is a rare disease advocate in the Ivory Coast, and in DR Congo connection has been established with Aime Lumaka, who is also a rare disease advocate. We are hoping to collaborate in raising awareness in both countries.

Finally, I should mention that I organized the first Regional Medical Advisory Panel meeting with lead doctors from Rwanda, South Africa, Sudan and Kenya. During the important discussions, we identified similarities and differences in the diagnosis and management of HAE in these countries.