Supporting Patient Partners (SPPs)
Working together with patients and patient organisations
ERN ReCONNET works closely with patients, families, and patient organisations to improve care for people living with rare and complex connective tissue and musculoskeletal diseases, mainly through the involvement of ePAG Advocates, who are the formal patient representatives within ERN ReCONNET (read more at this link).
In order to strengthen collaboration and inclusiveness, ERN ReCONNET may also involve Supporting Patient Partners (SPPs).
Supporting Patient Partners contribute by sharing perspectives, helping disseminate information, and supporting specific ERN ReCONNET activities, even though they are not involved in formal governance or decision-making.
Who can be a Supporting Patient Partner?
Supporting Patient Partners may include:
- Patient organisations in Europe that represent patients and families affected by diseases within the scope of ERN ReCONNET, but do not meet the criteria to become ePAG Advocates
- Patient organisations outside Europe representing relevant rare or complex conditions
- Individual patients and family members living with a relevant condition
- Online or social media–based patient support groups representing affected patients and families
What do Supporting Patient Partners do?
Supporting Patient Partners may:
- Support the dissemination of surveys and projects developed by ERN ReCONNET
- Help share ERN ReCONNET information within their communities
- Provide feedback on selected activities, when requested by ERN ReCONNET
- Stay informed about ERN ReCONNET’s work and developments
Patient organisations are asked to nominate one contact person to act as a liaison with the ERN ReCONNET ePAG and the ERN ReCONNET Coordination Team.
Important to know
- The role of Supporting Patient Partners is supportive and collaborative, helping strengthen ERN ReCONNET’s connection with the wider patient community
- Supporting Patient Partners are not ePAG Advocates and do not take part in the formal governance of ERN ReCONNET
ERN ReCONNET Supporting Patient Partners
Christine Gerstenfeld
Dr. med. Christine Gerstenfeld is a physician, specialized in psychiatry and working as a psychoanalyst. As a patient herself, her aims are to increase awareness of the disease within the medical community, to work towards encouraging scientific research into the causes of RP, and to facilitate the access of new patients to early diagnosis and treatment.
“Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.” (Susan Sonntag in her book “Illness as Metaphor”)
Patient organisation represented: Deutsche Rheuma-Liga
As the largest German self-help organization in the health sector, with around 270,000 members, the German Rheuma-Liga independently advises and offers practical help to those affected, free from commercial interests. It was established in 1970 and supports and funds research projects on rheumatic diseases. It represents the interests of patients with rheumatic diseases in governmental health and social policy bodies, like the Federal Joint Committee, which makes decisions about details of health care, and the in the Institute for the Quality and Efficiency in Health Care (IQWIG). It supports patient representatives in the development of clinical guidelines and research.
