From Salah Alioui, Vice-president of HAE Algeria

A popular Algerian idiom says, “There are only mountains that don’t meet”. Another way to say this is that, as long as you keep moving, you’ll meet people you never expected! This is precisely what happened years before when my old colleague Mohand-Cherif (now President of HAE Algeria) and I met for the first time during a night shift 700 km away from our homes and discovered while having a friendly chat that both our families were “rare”! The reason they were rare is that Mohand-Cherif wife and kids and my brother were diagnosed a few years before with a rare and potentially life-threatening disease, called HAE.

During that night, we talked about the importance of having a patient group to support each other in the daily struggle for medical care in a country where even the basic medication is not available. We decided hence to work together to achieve that ambitious project of a local HAE organization. We were yet aware of all the difficulties we were going to face since a few attempts were made before to create such an organization – without any success due to the lack of commitment from doctors and the bureaucracy from the authorities!

A few years later, with a lot of determination and with the great help of the HAE International Regional Patient Advocate Maria Ferron we finally witnessed 28 December 2019 when we had our first meeting together with patients and doctors for the unique purpose of setting up our local HAE organization.

After an opening speech from doctors and organizers and discussing the technical issues for the creation of a formal organization (gathering 25 founding members representing at least 12 states and a lot of official authorizations), we invited the patients and their families to talk about their HAE stories. That moment was very emotional for patients and their families. There were a lot of tears and pain but also a lot of pride and dignity from both patients and their families. We finally came up with some suggestions to improve the care of HAE patients. Among the most important suggestions were:

  • The creation of a reference center with a live phone line (24h/24) where trained doctors can back patients and local emergency doctors all around the country so that the patients don’t all the time remain relating solely to their family doctor (who may or may not be reached for emergency assistance)
  • Working with doctors to convince the medical authorities to provide emergency medicine and prophylaxis treatment to HAE patients
  • Help in establishing the national HAE patient’s registry
  • Increasing awareness among doctors and authorities.

At the end of the meeting, patients and families were happy and grateful for this first meeting, and we understood that talking about their disease and sharing their stories were of great importance and a real relief for the patients and their families!

That credit from patients and their families gave us as a big push, and already on 1 February 2020, we gathered again for a General Assembly with about 80 peoples – patients, doctors and volunteers – for the official kick start of our local organization.