Our New Youth Group Members 2021

Youth Group 2021 by Anastasia Semaan

After our recent recruitment call, as the EPF Youth Group we are very happy to welcome four lovely new members to our Youth Group Family. They all come from different geographical backgrounds and represent a variety of patient communities. As a board we are also very excited to work with these new members and work on current projects as a team.

First, we welcome Cornelia Pauna, a Romanian representing the Multiple Sclerosis patient community. In 2019 she began volunteering in a national organisation which led to her participation in STYPA 2020. Through her recent advocacy in human rights, she wishes to educate herself and others on how to raise their voices and fight for their rights. By joining the Youth Group, her “main goals as a patient advocate are to reduce the stigma associated with chronic patients and to participate in shaping a society where ‘equality’ is the premise.”  

Next, we welcome Blaž Urbanc, A Slovenian representing the Spinal Muscular Atrophy rare disease community. He is an advocate for all those in need of support in protecting rights of people with disabilities. He is engaged in the “Programme Committee for Programmes for the Disabled People” within the national institution Radio Television Slovenia (RTV Slovenia). It is from his own curiosity and active lifestyle that inspires him to take an active role in a multidisciplinary lifelong integration of disabled people and those with kinds of chronic diseases. He firmly believes and is fighting for a future that is based on prevailing values such as “human dignity, non-discrimination, inclusion, and most importantly supporting struggles to provide better health care standards for every one of us!”

We also welcome Bianka Tomózer to our team, an Hungarian and graduate from the 4th Edition of STYPA. She is a biologist completing her master’s and is also a member of the “‘Together it’s easier’ For Women’s Health Foundation”. She is a representative for the endometriosis patient community, and she began volunteering with the organization, which is also the only official public benefit non-governmental organization in Hungary dedicated to supporting women with endometriosis. As a volunteer she raises awareness about endometriosis, and in 2019 the Foundation has created a menstruation tracking application, where you can add your symptoms and the application indicate if there is a chance that you have some illness relating your women health. As a volunteer, she recognises that she can see the struggle of women who are suffering from this disease in all age groups, partially because it is widely unknown in society and by gynaecologists and this causes diagnostic delays. Ultimately, she believes that “our biggest weapon in the battle against endometriosis is information and spreading awareness especially among youth, so they can catch their disease in early stages, therefore we can save painful years for young girls.”

Our final addition is Rositsa Malinova, a Bulgarian representing the Cystic Fibrosis patient community. She is a member of the “Association of the Patients with Respiratory Failure and Lung Transplantation” in Bulgaria (Сдружение “Дихателна недостатъчност и белодробна трансплантация”), which emphasises the importance of healthcare for rare lung diseases. She has also taken part in “Vertex Save Us”, which is seeks to unite Cystic Fibrosis patients and advocates from around the world, with the aim of gaining access to life-saving modulator drugs. As a patient herself, she is aware of the everyday struggles and battles caused by her condition. Her ultimate cause “is securing access to life-saving innovative treatments for the most vulnerable patients”. By joining the Youth Group, she hopes to “make a difference for the patients with rare lung diseases in Europe.”

The EPF Youth Group welcomes you all to our big  Family and are looking forward to working with each one of you to continue our journey to make a difference for young patients.