This video was recorded for the 10th anniversary of hae day :-)
Tell us a little about yourself
My name is Maria Ferron, and I currently live in Madrid, Spain. I was diagnosed with HAE at the age of 2. My two sisters also suffer from HAE and we all inherited it from our father.
I studied Business Administration, and I did a Masters in Finance. I have been working in investment banking since I was 25.
I started as an RPA in April 2016 thanks to my mother, Sarah (President of the Spanish association and member of HAEi Board of Directors), who told me this great initiative was taking place. I am also a member of AEDAF (Spanish association), and I have been Secretary since 2018.
Tell us a little about your region
The challenges we face in this region are the large cultural and linguistic (with seven different languages spoken) differences, well as the current situation regarding HAE knowledge and access to medication.
In the European countries, there is a high level of HAE knowledge, diagnosis, access to medication, awareness, etc., and the patient associations have been established for many years. In the North African countries, they have a completely different situation as they are just beginning to identify patients and diagnose them, whilst modern HAE treatments are not yet available.
- Region: Mediterranean, North Africa & British Isles
- Number of countries: 15
- Number of member organizations: 7
What are you most proud of being able to do for the countries in your region?
What I am most proud of is being able to help the North African countries to start to organize and establish local associations and to support them in organizing their first regional meeting at the beginning of 2020.
I have also encouraged all the countries to use HAEi resources as these are a great tool to manage associations. I also offer practical support whenever I can.
What changes have happened for people with HAE in your region whilst you have been an RPA?
There are now new MOs registered in North Africa.
Many more physicians across the region, especially in North Africa, have gained vital knowledge of HAE.
The MOs in my region are now increasingly active in patient advocacy, raising awareness, organizing local activities, and taking part in HAEi initiatives.
What next steps will you be taking as an RPA to support your region?
To try my best to help those countries without modern treatments to gain access (registration/approval and reimbursement) and to keep supporting all the countries to improve the quality of life of HAE patients.
Want to know more about another HAEi Regional Patient Advocate?
>> Central Eastern Europe, Benelux and Middle East
>> Central America and Caribbean
>> Mediterranean, North Africa and British Isles
>> Nordics, Germany, Austria and Switzerland