Eleonora Leotta is a 25 years old Law student from the University of Como and European Studies master student from University of Parma. She enjoyed an Erasmus + Traineeship Programme with EFA for a three-months period. It was her first-ever work experience.
Five years ago, I was diagnosed with a celiac disease and a lack of lactose assimilation: I lost weight and the doctors weren’t able to understand what was happening to me. My experience was terrible, and it can happen to anybody. Having someone that fights for you, for your rights and for your health is what we all need when we are the most vulnerable, when we are patients.
Mikaela Odemyr is EFA President, Vice-President of the Swedish Asthma and Allergy Association (Astma och Allergi Förbundet), mother of three children (14, 18, 20) with severe asthma and food allergies.
I’ve volunteered for the last twenty years to make a difference for patients in my country before becoming EFA President. The scope has changed but somehow the goals are the same: improve the care, environment and prevention of allergy and respiratory diseases so that patients feel comfortable about the disease and can be who they truly are.
Veronique Olivier is President of EFA Member AFPRAL (Association Française pour la Prevention des Allergies)
On July 24 an article appeared in the French press congratulating a chef from the city of Nancy for his disobedience to the new food labelling law. The restaurateur refused to comply with the INCO decree on non-prepackaged allergens. His disobedience was deliberately aggressive and insulting. Hanging on his window, he mocked people with allergies on a poster that every passerby could read, inviting them to eat elsewhere than his restaurant if they wanted security from as pasteurized or lyophilized products.
Federico Perini is a 21 years old Economics student from University of Venice. He enjoyed an Erasmus + Traineeship Programme with EFA for a three-months period. It was his first-ever work experience.
The first time I felt Brussels atmosphere, I got astonished. Brussels is the well-known capital of the European Union, where citizens are politically represented. I wondered whether Brussels was the capital of democracy or the people’s city. I somehow have an answer now, thanks to my experience working for the European Federation of Allergies and Airways Diseases Patients’ Associations (EFA) as an EU Projects intern.
By Roberta Savli, EFA Senior EU Policy Advisor
From today, 20 May 2016, tobacco products sold within the European Union look more dissuasive thanks to the transposition at national level of the EU tobacco products directive. I have been waiting four years for this day. I started to work for EFA just a few months before the European Commission proposed the directive in 2012 and, from the beginning I knew it would not be an easy game. It rather looked like David versus Goliath as tobacco industry seemed to have employed hundreds of lobbyists, while public health NGOs active in the field of tobacco control like EFA accounted for no more than ten Brussels-based advocates.
Daniel Russell is Chair of the myAirCoach Advisory Patient Forum
My daughter wants to be autonomous –what child doesn’t crave independence?–, but as a parent I must take responsibility for her health and welfare, until she is mature enough. So I’m looking for ways to get my child take her asthma medication which doesn’t involve me constantly reminding her morning and night. For my own peace of mind, I do watch her take her inhaler, but at some point I will need my daughter to take responsibility for taking her asthma medication as prescribed. A scary thought, but not so with the advances in mobile health (mHealth) and the myAirCoach project.
Anne Kearney is Communications & Digital Media Manager at Asthma Society of Ireland
At the start of March I returned to Dublin and to the Asthma Society of Ireland after a five month secondment to EFA. Brussels was brilliant. If I had to pick one key learning from my 5 months it would be how important EFA’s members are to the work of the organisation and how crucial communication and collaboration is, in order to achieve our joint aim of putting the patient’s voice at the centre of decisions affecting their health. The team were always anxious to hear the member’s point of view in terms of all their activity and I hope that I helped contribute to this shared exchange.
By Roberta Savli, EFA Senior EU Policy Advisor and Chair of EFA Food Allergy Working Group
Food allergies impact the whole life of patients. They might result in poor nutrition and quality of life, fear, restrictions, social isolation, and sometimes even death (anaphylaxis). When patients are kids, family routines are adapted to avoid the presence of certain ingredients at home. But what happens with their social development? New studies show that in Italy 20% of young children with food allergy have never attended a birthday party! For them, eating the wrong piece of cake could be fatal.
Since December 2014, there are new EU rules to help identify allergens in food. Last week, I was invited to speak at the World Allergen Food on how to go further in these measures. The fact is that these new EU requirements only apply to a list of 14 identified allergens despite people being allergic to other substances than those 14. As I explained at the event, consumers should therefore have access to all ingredients present in the food they eat, even if they are sold in small packaging.
By Aisling Doherty, Health Promotion Officer with the Asthma Society of Ireland and Course Facilitator for the Asthma Education Programme in Disadvantaged Communities
In 2013 the Asthma Society of Ireland developed and piloted an asthma education programme for disadvantaged communities. An external evaluation on the pilot strongly recommended wider implementation. This programme has been shown to be an effective and relatively low cost means of building capacity around asthma health promotion in disadvantaged communities. The training empowers participants to disseminate key learnings about asthma management and inhaler technique to members of their community. The feedback on the programme has been particularly positive from participants and coordinators of the communities, with reported improvement in individuals own self-management of asthma. It also shows the impact of this learning spreading throughout the community.
By By Inga Zalnerausine and Dominique Hamerlijnck
This November Inga Zalnerausine and Dominique Hamerlijnck attended the EMA patient and consumer training, as representatives of EFA. There were about 40 representatives at the training, from approximately 24 patient and consumer organisations. It was an intensive day, as well as a very interesting one.
EMA organised this meeting to help prepare participants for their role as a patient or consumer representative in EMA meetings. The day helped us to understand the different aspects of what EMA does and gave us insight into how we, as patient and consumer representatives, can prepare for meetings and increase our effectiveness.