All posts by Jana Popova

Jana Popova

About Jana Popova

Jana is 27 years old and she is from Bulgaria. When she was 10 months old, she was diagnosed with SMA (Spinal Muscular Atrophy), Neuromuscular disorder. She is Executive Committee member of the European Alliance of Neuromuscular Disorders Associations (EAMDA) and member of the Bulgarian Association for Neuromuscular Diseases. She is also PhD student at the University of Sofia and works as a freelance journalist. 

EURORDIS Summer School – a week of inspiration

In June I had the great honor to participate in the professional Expert Patients and Researchers Summer School, organised by EURORDIS (Rare Diseases Europe). The event took place in the beautiful city of Barcelona from 11th to 15th of June. This training was an incredible opportunity to gather together researchers and patient advocates, and I was impressed by the strong motivation of all 40 participants and 20 Summer School Trainers.

The main purpose of the Summer School was to sharpen the advocacy skills of patients and researchers and to increase their awareness about regulatory process of therapeutic development. This year the training course was focused on empowering patients and providing them an opportunity to advocate on European level. But what is the background of this event?

Background of EURORDIS Summer School

The Summer School was launched in 2008, aiming to provide specific support to expert patients. The annual training program consists of variety of topics, including better understanding of clinical research and methodology, medicines development, regulatory procedures, ethical principles etc. The Summer School is combined with 7 pre-training online modules, which have to be completed before the start of the course. They are available for free for everybody.

Highlights of the EURORDIS Summer School 2018

The first day of the Summer School kicked off with an inspirational lecture about the academic and patient representatives perspective on drug development for rare diseases, presented by Prof. Dr. Annemieke Aartsma-Rus and Elizabeth Vroom – founder of the Duchene Parent Project Netherlands. Their wonderful presentation was the best start of one amazing week, full of professional lectures, inspirational role-play sessions and interactive discussions between participants and researchers.

In my opinion, another important part of the program was the introduction of the European Medicines Agency (EMA) to patient advocates and the possibilities for their engagement with it. Also essential highlights about recent achievements in pharmacovigilance and how patients can receive better funding for their organisations were presented. In addition to that, there was an introduction about different projects for patient advocacy and involvement of patients on European level.

The end is only the beginning…

For me the end of the EURORDIS Summer School was just the beginning of one inspirational journey. During the course I have met many wonderful people, who were not afraid to defend the rights as patients with rare disorders. At the same time, I realised that only if we stay together as patient community, we can achieve better results and we can justify the fact that we are valuable members of the society.