From Patricia Karani, President, HAE Kenya

As president and founder of HAE Kenya, I was invited to attend the 9th Biennial African Society of Immunodeficiencies (ASID) Congress held in Nairobi, Kenya, from June 25th to 27th 2025 in collaboration with the Allergy Society of Kenya, ASOK. The congress, themed “The African Landscape of Primary Immunodeficiencies and Allergies – in the Era of Personalized Medicine” had a special emphasis on the African context.

The International Nursing Group of Immunodeficiencies (INGID) and the International Patient Organization for Primary Immunodeficiency (IPOPI) also hosted events alongside the congress, including a two-day Africa Patients’ meeting, which HAE Kenya was invited to attend.

IPOPI is a group of patients living with rare diseases from different countries, and they recognize HAE as rare. We were taken through an interactive skills-building workshop. We learnt ways of how to seek and collaborate with the relevant stakeholders during our awareness and advocacy activities in our individual countries and strategies of good governance within our individual patient organizations. We highlighted our challenges and came up with both long-term and short-term action plans that are achievable within various time limits.

We were also encouraged to build patient group morale by celebrating our wins whether big or small as we conduct our advocacy work in our individual countries in order to boost group momentum. HAE Kenya was glad to be invited by Martine Pergent (Chairperson of IPOPI France) and Cynthia Oluoch (Chairperson of PID Kenya and member of the IPOPI board.

The skills covered in the IPOPI workshop are universal to patient advocacy and reflect the courses HAEi offers to Member Organizations in HAEi Advocacy Academy. Member Organizations can obtain their exclusive access code to view course content by speaking with their Regional Patient Advocate.