New ePAGs Advocates joined the ERN ReCONNET

ERN ReCONNET is a growing Network and we are pleased to announce our new ePAG advocates that recently have joined us following the addition of Jose Ballarin in June. Those women will further strengthen our actions and impact across Europe on behalf of rare patients.
Thank you and welcome on board!

The Network welcomes Olga Drapalova and Schlüter Silke as new patient representative for the Idiopathic Inflammatory Myopathies (IIM) disease group.
Olga is from Czech Republic, she is a former teacher, who taught many years History and Russian in the lower secondary schools. After gaining more educational experience, she worked as a regional inspector for many years. Before her retirement, she had worked as the inspector for the secondary level of the European Schools; currently, she is retired. Regarding her patient advocacy roles, she is the chairwoman of the Czech Myositis Working group, at ERN ReCONNET she is an ePAG Advocate for Myositis Working Group and participates in the project “Patient Myositis Journey and the Red Flag for Myositis”; she is also a member of many other international projects.
Silke is from Germany, she worked full-time as a state-certified educator (partly in a Kindergarten), in 2004, physical symptoms of her myositis had increased so much that she was retired.  Silke is very active on patient advocacy, she is the chair of the “Myositis-Gruppe” (German myositis group) within the “Deutsche Gesellschaft für Muskelkranke e.V. – DGM”, she is also board member of the German Network “MYOSITIS NETZ e.V.”, the “International Myositis Society – iMyoS”, and the ERN EURO-NMD muscle working group. Silke is listed as a patient representative for national and international projects dealing with either myositis or neuromuscular and rheumatic diseases in general (such as ENMC, IMACS, MIHRA). At ERN ReCONNET, Silke is involved in creating content for webinars, congress programs, aspects for Red Flags in IIM and surveys.

Magdalena Ciupera is an ERN ReCONNET ePAG representative for Mixed Connective Tissue Disease (MCTD) joining the forces with Vera Guimarães.
Magdalena is from Poland; she is an English teacher by education and an experienced manager in the hospitality sector. Magda is part of Stowarzyszenie “3majmy się razem”/Let’s stay together! National Association of Young People with Connective Tissue Diseases based in Warsaw (POLAND) and it is vital for her to work to identify systemic issues and barriers that impact patients’ access to care and quality of treatments. The aim is to improve healthcare policies, practices, and outcomes for patients. Magdalena joined ERN ReCONNET to benefit from the collective expertise our multidisciplinary Network will provide to her, and simultaneously to share with our expert’s information on available resources, support services, and community organizations that can assist patients in meeting their healthcare needs.

Dr. Camelia Bucsa is from Romania, she is a pharmacist by education and training and works as a researcher. In 20219, Dr. Bucsa was diagnosed with Relapsing Polychondritis (RP) and later, in 2021, she founded ASPOR, the Association of Romanian Patients with RP, based in Cluj-Napoca.
At ERN ReCONNET, Camelia is an ePAG representative for RP together with Lisa Matthews. In particular, Dr. Bucsa is a member of the our Working Groups: Registries and eHealth and Patient’s Partnership. Dr. Bucsa joined our Network with the aim to facilitate RP patients’ access to information, to increase knowledge about the disease among patients and medical professionals, to advance research, and to facilitate patients’ access to medical help when needed. So far, she was engaged in research projects on quality of life of patients with RP within ERN ReCONNET and she was involved in the development of educational webinars for both patients and physicians; she was one of the invited speakers to the “What are the pitfalls and red flags of Relapsing Polychondritis (RP) to be considered by the GP/HCP?” webinar held by ERN ReCONNET – recording is freely available on our YouTube channel -.

ERN ReCONNET is proud to have you on board and we look forward to continuing our collaboration to foster a stronger community and better support patients.