PaedDr. Olga Drápalová is an ERN ReCONNET ePAG representative for Idiopathic inflammatory myopathies (IIM).

In particular, in our Network Olga is an ePAG Advocate for Myositis Working Group and participates in the project “Patient Myositis Journey and the Red Flag for Myositis” and is also a member of many other international projects.

At the national level, she is a chairwoman of the Czech Myositis Working group.

She has been part of the ERN ReCONNET Network for nearly a year, it is very important for her. Currently, she is preparing a webinar for the Myositis Working Group, which focuses on Multidisciplinary diagnosis and multidisciplinary team treatment of IIMs.
Her future goals are to help raise awareness of rare diseases and unify treatment approaches for patients with care for rapid diagnosis and effective treatment across Europe. She is interested in how patients get psychological help and strengthen their movement habits, which is crucial for patients with IIM.

She is currently retired. Regarding her professional career, 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.
Olga lives in Třebíč. She is married and has a son named Tom.
Despite her limitations caused by a rare disease, she enjoys outdoor activities such as nature walks, hiking, biking, traveling, skiing in winter, and visiting historical sites both at home and abroad.

Be stronger than your myositis! Stay positive, motivated and encouraged!!!

The Czech Myositis Working Group was established in 2020. Since 2020, Olga has chaired the Czech Myositis Working Group which operates under the umbrella of the Czech League against the Rheumatism.
The umbrella patient organisation has been working in the field of patients more than 30 years. Olga prepared an informative leaflets for patients in collaboration with rheumatologists – Living with Myositis and We Exercise with Myostitis.

The main goal of the patient association is to improve the living conditions of people with rheumatic diseases, including ensuring the availability of effective treatment and raising awareness about rheumatic diseases.
The mission of the patient association is to bring together members and their family members for the purpose of mutually beneficial activities, establishing cooperation with experts in the field of health and social services, organizing professional lectures, physiotherapy, occupational therapy, friendly meetings, issuing publications and information materials, providing a mediating consultancy services in the field of social and legal matters and, of the use of compensatory aids, providing information about the disease and new treatment options, cooperation with state and local self-government bodies, state and non-state organizations, cooperation with domestic and international professional societies and patient organizations, running the association’s website.
Its vision is aimed to reach the largest possible number of patients with rare diseases, provide for their needs and respond to the latest trends in the field of patient associations.

Its role in ERN ReCONNET is to share examples of good practice (participating in the Good practices webinar) and participation of the in several projects (e.g., Myositis Patient Journey, Myositis Red Flag, etc.) through an ERN ReCONNET representative.

The added value of ERN ReCONNET from the perspective of our patient association and vice versa is extremely important. It is about raising awareness of rare diseases, their diagnosis and treatment, mutual enrichment, information sharing, participation in various questionnaires and surveys. Of course, the unification of access to treatment among the states of the European Union is also an important aspect. This field is so endless that only the core values are mentioned.

Motto of this patient organization is…

When we work together, we can achieve better results and make life easier.