MESINFLAME builds on scientists with an excellent track record, young scientists, a private company and the "German Rheuma League".
The management consists of the project coordinator (CO) of the consortium, Prof. Dr. Thomas Pap, the Steering Committee (SC) and the scientific advisory board (SAB).
Project Coordinator (CO)
As the project coordinator, Prof. Pap is responsible for ensuring that the consortium follows its goals and work plans. He
- monitors the progress of the projects
- organizes all aspects of the SC meetings
- coordinates communication between the partners as well as between the consortium and third parties.
More than 300,000 members make the German Rheuma League the largest German self-help association in the health sector. With their commitment, the members lay the foundation for the broad spectrum of services of the German Rheuma League. More than ten thousand volunteers provide information to the newly ill, create advice and support services and organize a wide variety of offers for those affected.
Open to all
There are a variety of rheumatic diseases. Whether people with osteoarthritis, inflammatory diseases, fibromyalgia, rheumatism in children or less common forms of disease, the German Rheuma League is there for everyone. Bechterew's disease, lupus erythematosus and scleroderma sufferers organize themselves in separate associations under the umbrella of the German Rheumatism League. 17 million people in Germany suffer from rheumatism. Some diseases develop slowly over many years. Others are acutely life-threatening and attack the organs. They always influence the life perspective of those affected. Anyone who lives with rheumatism therefore needs help.
Everywhere in Germany
The network of local groups and associations of the German Rheuma League covers all of Germany from east to west, from north to south. There is a multitude of opportunities for encounter and support in dealing with the disease on site: movement therapy, occupational therapy, pain management courses, social law advice, care for the severely affected, self-help and discussion groups, parenting groups, meetings with young rheumatics and many leisure activities.
The German Rheumatism League always offers those affected and their relatives the most up-to-date scientific, political and social answers to their questions about everyday hurdles of all kinds. There is a large selection of understandable, competent and comprehensive advice on various forms of illness. The brochures, leaflets and other information material can be ordered from the regional and member associations and via the Internet. At www.rheuma-liga.de there are also many other service offers such as a "supply map" and a forum for exchange. The members' magazine “mobil” always keeps its readers up to date with the latest research and provides many suggestions and practical tips with changing focuses. In the editorial office mainly affected persons and medical advisors work.
Dialogue and education
The German Rheuma League and the associations under its roof rely on dialogue with members, those affected and relatives. That is why they organize the information events and training courses. One focus here is also on the training of volunteers and those working in the health sector. The German Rheuma League has also developed and offers patient training programs.
"Making rheumatism curable" is the aim of the rheumatism foundation established in 2008. The German RheumaLiga also specifically promotes research and awards doctoral grants for research projects in the field of self-help and care. Patient representatives bring their concerns to the appropriate medical research committees.
Independent, but partial
The German Rheuma League is supported by its members and is independent and non-partisan in its goals and actions. But it takes sides wherever the concerns of people with rheumatism are concerned. That is why the German Rheuma League is committed to providing the best possible medical care and social support at local, state, federal and European levels.
Benefits for members
All offers of the German Rheuma League are specially tailored to people with rheumatism. The German Rheuma League advocates the interests of its members, for example through commitment to health policy. It brings its members together: in discussion groups, parents' groups and at meetings for young rheumatics. And it provides people with rheumatism with all the important information. An annual membership includes the purchase of the magazine mobil, personal advice and extensive information material in almost all regional associations.
We help - the Deutsche Rheuma-Liga
In participatory research, patient representatives / affected persons are involved in a research project so that they can work on an equal footing with the scientists and contribute their knowledge to the project. The patient's perspective can thus be taken into account much better. Together with the scientists, the so-called research partners consider which research questions are useful, which methods are required, which formulations are useful, etc. In this way, they ensure that the projects are designed in such a way that the results later also have a meaning in practice for those affected.
The research partners are prepared for their work through a "training course" and receive appropriate support from the DRL (German Rheumatism League Bonn) and the EULAR (European League against Rheumatism). The participation (= involvement, advice) of the research partners takes place both in clinical research projects and in recommendations or the development of guidelines or training documents or manuals.
Research partners actively contribute their practical experience to the projects. From the perspective of the research partners, e.g. Existing informational texts or tenders formulated in such a way that they are understandable for the target group.
Steering Committee (SC)
The SC consists of the CO and five PIs representing the locations and overarching themes. It will be chaired by the CO and will be responsible for the implementation of all activities:
- monitoring the progress,
- interaction with the SAB,
- promoting gender equality and equal opportunity policies,
- decisionmaking on scientific and administrative matters,
- developing strategies for dissemination and exploitation of results,
- organisation and management of the training program.
The SC will meet every four months and SC members will be assigned specific responsibilities.
Scientific Advisory Board(SAB)
CO and SC will be assisted strategically by the SAB. It will be composed of international experts. They have been selected based on their skills and experience and will convene once a year to review the advances and provide independent advice.
The consortium consists of an interdisciplinary team including clinician scientists of different specialties (Rheumatologists, Neurologists, Dentists, Micobiologists) as well as basic scientists (Immunologists, Anatomists, Cartilage and Bone biologists) and a start-up company in the field of innovative EV-treatments for IMDs. Every subproject is designed to combine the expertise of several of these experts, particularly of clinician scientists and basic scientists.