The National Institute of Geriatrics, Rheumatology and Rehabilitation in Warsaw participates in the ERN ReCONNET and ERN RITA. Cooperation among European centres improves access to specialist expertise in the diagnosis and treatment of rare and complex diseases.
Knowledge sharing, clinical collaboration, research and education.
“Knowledge travels, not the patient.”
The network brings together expert centres, clinicians, researchers and patient representatives. It supports multidisciplinary consultations, care standards, registries and education. NIGRiR also serves as the Polish ERN ReCONNET National Hub.
Collaboration in primary immunodeficiencies, autoinflammatory and autoimmune diseases. NIGRiR’s profile within this network includes paediatric rheumatology.
As the National Hub, NIGRiR connects the European network with the Polish healthcare system. It fosters cooperation among healthcare professionals, patient organisations and national institutions, and disseminates information on ERN tools, expert consultations, registries and educational activities.
Representative: Professor Marzena Olesińska, MD, PhD
Deputy representative: Maria Maślińska, MD, PhD, Associate Professor at NIGRiR
NIGRiR co-coordinates the MCTD Disease Group within ERN ReCONNET. The co-coordinators are Marzena Olesińska and Benjamin Chaigne. The group develops collaborative research and educational initiatives, including early recognition, assessment of irreversible damage and patient participation in research.
The network brings together Disease Groups and cross-cutting Working Groups focusing on education, registries, research, quality of care and patient partnership.
Disease Groups — develop disease-specific knowledge and initiatives, with active involvement of patient representatives.
Working Groups — education and training; registries and e-health; research and quality of care; patient partnership; and young professionals (ERN ReCONNET Young).
National Hubs — represent and promote the network nationally and support the integration of its activities into healthcare systems.
Clinical Patient Management System is a secure platform for discussing complex patient cases among multidisciplinary expert teams across countries. Its updated version facilitates collaboration among centres, including invited specialists.
About CPMS 2.0 ↗A European registry infrastructure for harmonising data collection on rare connective tissue diseases. Common data standards support analyses of disease course, manifestations and care outcomes, as well as multicentre research.
About registries ↗Development of warning signs to help recognise a possible rare disease earlier and refer patients to the appropriate specialist in a timely manner. The network is advancing initiatives for different disease groups, including MCTD.
Clinical tools ↗Development of care pathway models for people with rare diseases, taking account of multidisciplinary input, collaboration between centres and the patient perspective. One area of work concerns systemic sclerosis.
RarERN Path project ↗Developing standards for the transition from paediatric to adult care, including team competencies, cooperation among specialists, decision-support tools and quality indicators.
Transition of Care Task Force ↗Collaborative clinical guidance, reviews of guidelines, decision-support tools and exchange of good organisational practices. This work involves experts and patient representatives.
Guidelines and tools ↗Expert work on an instrument for assessing irreversible organ damage in mixed connective tissue disease has been undertaken in Warsaw, with international specialists and patient representatives.
In a complex diagnostic or treatment situation, a patient may discuss the need for an expert consultation with their treating physician.
The medical team assesses whether a consultation within the European network is appropriate and possible under the applicable procedures.
An authorised centre may use CPMS in accordance with data protection requirements and the necessary patient consent.
Representatives of European patient organisations (European Patient Advocacy Groups, ePAG) participate in Disease Groups, webinars, educational materials and quality-of-care initiatives. Contributors to the MCTD group include Magdalena Ciupera and Vera Guimarães.
Usually not. Experts from different countries may discuss a case remotely. Any cross-border treatment is subject to separate rules.
ERN ReCONNET provides educational activities for physicians, other healthcare professionals and patient representatives through webinars, courses, scientific meetings and exchanges among centres. Some resources are available online free of charge.
Course on rare connective tissue diseases: disease-specific modules drawing on expert knowledge and patient perspectives.
Exchange programme: short educational placements at network centres, supporting the exchange of good practices.
Transition of Care training: preparing teams to ensure continuity between paediatric and adult healthcare.
National Institute of Geriatrics, Rheumatology and Rehabilitation
1 Spartańska Street, 02-637 Warsaw, Poland
Official contact address for the Polish National Hub.
Representative: Professor Marzena Olesińska, MD, PhD
marzena.olesinska@spartanska.pl
Deputy representative: Maria Maślińska, MD, PhD, Associate Professor at NIGRiR
maria.maslinska@spartanska.pl
Information about ERN RITA: NIGRiR centre profile ↗