ERN ReCONNET
ePAGs
Magdalena Ciupera
Magdalena Ciupera is an ERN ReCONNET ePAG representative for Mixed Connective Tissue Disease (MCTD).
As a patients advocate she became a member of the ERN ReCONNET community for patients in Poland to benefit from the collective expertise of multidisciplinary teams as well as provide information about available resources, support services, and community organizations that can assist patients in meeting their healthcare needs.
For Magda, as patient representative from Poland, it is vital to work to identify systemic issues and barriers that impact patients’ access to care and quality of treatments. The ultimate aim is to improve healthcare policies, practices, and outcomes for patients.
Magda is an English teacher by education and an experienced manager in the hospitality sector.
Magda is part of the “3-majmy się razem” patient organization based in Warsaw (Poland).
ERN ReCONNET is honored to welcome new ePAG Advocates that will greatly contribute to our projects, actions, and initiatives.
Welcome Olga Drapalova from Czech Republic and Schlüter Silke from Germany as new patient representative for the Idiopathic Inflammatory Myopathies (IIM) disease group, Magdalena Ciupera from Poland representative for the Mixed Connective Tissue Disease (MCTD), and Dr. Camelia Bucsa from Romania representing Relapsing Polychondritis (RP).
Happy to have you on board and congratulations for your new roles in ERN ReCONNET!
ERN RECONNET WEBINARS ON MCTD ARE FREELY AVAILABLE.
This Association of Young People with Connective Tissue Diseases was founded in 2008 by people who got ill in their childhood or youth, and now, as adults, they want to actively support patients, their families.
The goals of the Association are the following:
- Social Integration of People with Inflammatory Connective Tissue Diseases to i) build a network of experience exchange and support among the members of the Association and ii) provide mutual assistance in solving problems related to inflammatory connective tissue diseases
- Raising Awareness about Inflammatory Connective Tissue Diseases to increase the knowledge about these diseases among the patients themselves, their parents, siblings, and the broader environment of the patient and society
- Preventive and Rehabilitation Activities to overcoming barriers to access new information regarding therapeutic options for systemic connective tissue diseases as well as improve the access to procedures, rehabilitation equipment, rehabilitation stays, and necessary orthopedic equipment
- Facilitating Transition from Pediatric to Adult Specialist Care by helping patients transition from pediatric care to specialized adult care upon reaching adulthood
- Providing Information on Legal Regulations for Sick and Disabled Individuals through out assisting patients in obtaining information about this legal frame concerning sick and disabled individuals
Main Areas of Activity of the Association are:
- Overcoming Formal and Customary Barriers by addressing obstacles that hinder patients from receiving appropriate treatment, rehabilitation, education, engaging in professional work, and participating in socio-cultural life
- Psychological Support to providing the necessary mental health support to patients and their families
- Organizing Gatherings and Workshops aimed at facilitating mutual exchange of experiences, meeting interesting people, and acquiring knowledge about the disease (our own or our child’s) through lectures and training sessions conducted by specialists
- Information and publishing activities regarding inflammatory connective tissue diseases to keep the community aware on such relevant info
- Collaboration with Local Governments to achieve statutory goals and initiating, reviewing, and participating in legislative work concerning people with rare and complex Connective Tissue Diseases
reach out to them via email at kontakt(at)3majmysierazem.pl
In addition, the “3majmy się razem” association is affiliated to EURORDIS and Lupus Europe.
