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 father and two sisters also suffer from HAE.
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 7 different languages spoken) differences, well as the current situation regarding HAE knowledge and access to medication.
In the European countries and Israel, 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.
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 organise and establish local associations and to support them in organising 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.