From Regional Patient Advocate Maria Ferron
I am happy to announce that Lanadelumab was recently approved to be used in hospitals in Portugal. Also, from Portugal, the HAE team has been working on setting up their 2022 actions plans which among others include an HAE awareness campaign (supported with an HAEi poster), creating an activity for hae day :-) 2022, increasing the number of members of the national organization and improving their activity in social networks.
During mid-February, a meeting took place in Italy between the board of the Italian Network of Hereditary Angioedema (ITACA) and the board of HAE Italy (AAEE APS.ETS). The focus of the meeting was the definition of the action plan for the conjoint objective of increasing the functionality of all the HAE regional centers and a survey of the current weaknesses and strengths. In Italy, patients and HAE centers (doctors) have played an important role in spreading treatments and care for this disease. They would like to keep this collaboration to produce new tools and give patients and doctors more opportunities to manage and study HAE and other forms of angioedema.
On 26 February 2022, the 15th Conference on Rare Diseases took place in Morocco. The Alliance of Rare Diseases in Morocco (AMRM) organized two events:
A webinar with the support of Laboratories Roche and Laprophan under the theme “Patients facing rare diseases”. This meeting was an opportunity to highlight once again the extent of these diseases as well as the difficulties that patients must overcome on a daily basis to live with their disease. Dr. Khadija Moussayer (President of the Alliance of Rare Diseases Morocco, President of the Moroccan Association of Autoimmune and Systemic Diseases (AMMAIS) and Vice-President of HAE Morocco (AMMAO) participate as a moderator while Imad El Aouni (President of AMMAO) spoke about HAE.
A hike in Benslimane with the support of the Jansen laboratory in support of rare diseases in general and one of the most severe, pulmonary arterial hypertensions, under the slogan “a step for a better breath”.
Rare diseases pose a real problem in Morocco, as they are the cause of medical wandering that can last a lifetime. They are difficult to diagnose due to the lack of reference centers and the absence of systematic screening for certain rare diseases at birth. Their care is also problematic because of the non-accessibility of drugs in addition to the wandering of the patient during the care pathway.
CSL Behring has recently launched the patient support program CALMA TM in Spain. The program is for those patients using subcutaneous Berinert® 2000. The program facilitates the continuity and follow-up of patients in long-term prophylaxis and reduces the emotional burden of the disease.
Also in Spain, around 70 HAEi posters were distributed by health care professionals during the 1st National Scientific HAE workshop organized by the HAE and Dermo-Allergy CSURs (Reference Centers, Services and Units of the Spanish National Health System) in February at La Paz University Hospital in Madrid. HAE Spain (AEDAF) distributed more posters to health care professionals and patients (to hang in their hospitals, general practices, and emergency rooms) at their annual meeting on 26 March 2022.
Also, I would like to mention that I am working on providing National contact Ahmed Ali Abudahair from HAE Libya and Dr. Mariem Kebe from Mauritania with access to HAEi poster printings to distribute in their countries to find more HAE patients.
