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Youth Group Members

   

Borislava Ananieva is President of the EPF Youth Group since September 2019. She comes from from Bulgaria, and has been a member of the Youth Group since its creation. She was kidney transplanted at the age of 15. She is involved in the Bulgarian National Patient Organisation and in the Bulgarian Union of transplanted people.

Learn more about Borislava!

Ivett Jakab is Vice-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!

 
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!
 

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!

Lembe Kullamaa is from Estonia: she was diagnosed with Juvenile Idiopathic Arthritis when she was 7. She is a member of the Estonian Chamber of Disable People and is the person in charge of Social Media for the Youth Group.

Learn more about Lembe!

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.

 

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).