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Youth Group Members

   

Ivett Jakab is President of the EPF Youth Group and she comes from Hungary. She had a liver transplant at the age of 16 due to a rare genetic disorder called Wilson’s disease. She works with patient organisations on the physical and psycho-social rehabilitation of children, adolescents and their families after transplant. She joined the Youth Group in early 2019.

Learn more about Ivett!

Marcus Ward comes from Ireland. He was born with spina bifida and hydrocephalus. As a member of the IFSBH Youth Group and SBHI, he is a very motivated young patient advocate! After joining the EPF Youth Group at #STYPA19 he started working on getting more and more involved with us and we are incredibly happy to finally welcome him on board!

Learn more about Marcus!

 

Anastasia Semaan comes from Cyprus. She was diagnosed with Noonan’s Syndrome, which is a rare genetic disease, when she was born in the USA. Now Anastasia is an undergraduate student in Education Studies combined with Special Educational Needs and Inclusion Studies!

Learn more about Anastasia!

 

Jana Popova is from Bulgaria: she was diagnosed with SMA (Spinal Muscular Atrophy), Neuromuscular disorder when she was 10 months old. She is a member of the Executive Committee of the European Alliance of Neuromuscular Disorders Associations (EAMDA) and member of the Bulgarian Association for Neuromuscular Diseases. She is also a PhD student at the University of Sofia and works as a freelance journalist. 

Learn more about Jana!

Sally Hatton is from the UK and was diagnosed with the rare bone condition called XLH (X-Linked Hypophosphatemia) when she was a child. As well as developing her own work advocating for patients with rare and uncommon disorders, Sally works as the Young Person’s Project Officer for Metabolic Support UK, and is a volunteer Trustee with XLH UK.

Learn more about Sally!

 

Nikola Kumovic comes from Serbia. He was born with severe Haemophilia A, rare bleeding disease. He has been an active member of Serbian Haemophilia Society from its founding and a member of European Haemophilia Consortium (EHC).

 

Erato Markantoni comes from Cyprus, and while she doesn’t have any chronic condition herself, her brother has cerebral palsy. She joined the Youth group to represent him and people that went through similar experiences, (providing an alternative point of view as a close relative to a person with a chronic condition). She is currently a high school student, aiming to study medicine at university and continue being an advocate for patient’s rights.

Learn more about Erato!

 

Erin Davies is originally from Wales but is based in Belfast. She was formally diagnosed with epilepsy in 2013 and has been an epilepsy awareness advocate for almost 5 years, working alongside Epilepsy Action and the International Bureau for Epilepsy. She's employed by a humanitarian organisation as a Recruitment & Selection Co-ordinator and is passionate about the promotion of diversity and inclusion. 

Learn more about Erin!

 

Marleen is a German/Spanish women’s health and patient advocate and a member of the European Institute of Women’s Health (EIWH). She is currently a European Public Health student and will start a Health and Social Psychology master’s program in the Netherlands this fall. She has asthma and is passionate about representing young patients and their families. 

Learn more about Marleen!

Learn more about Marlou!