From Vice-President Salah Alioui, HAE Algeria
HAE Algeria organized its first national HAE awareness day on 25 December 2021 at Lamaraz Hotel in Algiers. The day was under the patronage of the Minister of Health and the Minister of the Pharmaceutical Industry. The slogan “Speaking out, gives hope! Taking actions, saves lives!” was chosen for this first edition.
The awareness day was aimed to raise awareness on HAE and how to improve the difficult situation of Algerian patients. The event was the first of its kind and saw significant media coverage.
A range of national and international experts animated the conferences. Two workshops were held during the evening session, one for patient advocacy and the other for health professionals to debate how to improve the care and diagnosis for patients struggling to get the proper care and diagnosis. A list of recommendations on improving the diagnosis and care was later handed to the relevant authorities.
The conference and workshops were a unique occasion for the patients and the media present to know more about this severe disease, its impact on the patients’ lives, and how modern and innovative treatments are improving the life quality of patients worldwide.
The patients present at the conference gave both caregivers and authorities moving testimony of their daily suffering and permanent fear for their lives. Officials from the two ministries made public and official commitments for patients to support them and improve their situations.
This awareness day was very important for HAE Algeria to uncover the suffering of our patients to the public and the authorities. However, the ultimate purpose would be to ensure access to modern therapies that exist worldwide but are still not available for Algerian patients.
Despite its young age (created in 2019), the HAE Algeria has made significant progress on all fronts. Our first feat since its foundation was to bring together the patients for the first time and allow them to speak out about their illnesses and to be listened to and supported.
After a large awareness campaign on the various media and newspapers, the list of diagnosed or undiagnosed Algerian patients has not stopped growing, same for the number of distress calls from patients. Patients call us for different reasons, asking for help dealing with doctors who are often totally unaware of HAE, asking for medicines, or seeking help with socio-professional issues due to the absence of official recognition of the disease.