News from Mediterranean, North Africa, Benelux and British Isles

From Regional Patient Advocate Maria Ferron

The period since the last Global Perspectives magazine has been really exciting, with a lot of activities, advocacy, and awareness efforts taking place.

Here are some of the top news stories from my region during this period:

I am thrilled to report that the 1st HAEi Workshop took place in Tunis, Tunisia, on 26 April. Following the foundation of the Tunisian association ANAOH, the number of patients diagnosed has been increasing, and we felt the time was right to bring patients together to introduce HAEi, raise awareness and increase education on HAE, and allow participants to share their experiences. HAEi worked hard on the logistics of the meeting and prepared an engaging agenda, including patient testimonies. We were delighted to welcome around 70 patients, caregivers, and health care professionals. The atmosphere was buzzing. We thank Prof Bouillet from France, who could not attend the meeting but recorded videos to be presented during the meeting, on HAE Modern Treatments & HAE in Pregnancy. The attendees took advantage of all opportunities to ask questions to get more information and clarify any doubts. They had their chance to share their personal experiences, and they contributed new ideas to implement locally to improve the local situation. A huge success!

After the meeting, Mohamed Osman (HAEi Advocacy Facilitator MENA) and I met with the Member Organization (MO) leads to demonstrate HAEi Connect and the different web designs that HAEi offers through our Hosted Websites resource. The Tunisian MO has now joined HAEi Connect, and they are starting to work on a new website that will help them to share more information with their members and increase their visibility to the public.

Patricia Karani (RPA for Sub-Sahara Africa) and I had the opportunity to attend the 9th Biennial African Society for Immunodeficiencies (ASID) Congress that took place in Nairobi, Kenya. We presented our experiences of living with HAE, an overview of the current HAE situation in African countries, and HAEi’s advocacy efforts in the African continent. You can read more in the ‘News from MOs’ section from Kenya.

For other countries in my region, HAEi’s website solutions continue to be popular and successful. I’ve been supporting Meryam Jennane, the Secretary of the Moroccan association (AMMAO), to develop a more sophisticated website and working with Yolaine Nemery (the lead for HAE Belgium) on web2go for Belgium as one of the first steps of boosting the patient group locally (check them out here). Yolaine recently took over as the lead and is building from the ground up.

Following our HAEi vision, “To unite and strengthen the HAE global community, achieve a world free of barriers where effective treatments are accessible everywhere, and provide a higher quality of life for people with HAE,” I have been supporting Libya in accessing modern HAE treatments. We’ve sent HAEi Board-authored letters to local institutions with a description of the impact of HAE on individuals and their caregivers, and the recommendations for treatment of this disease. To date, there has been no reaction to the letters, but I will continue to insist until we achieve our objective.