About usThe Danish National Rehabilitation Center for Neuromuscular Diseases (RCFM)Who we are RCFM is a rehabilitation and research institute specializing in neuromuscular diseases. The center offers life-long counseling and guidance to individuals and families with neuromuscular diseases and information and education about the diseases and their implications to local health providers and authorities. People with a confirmed neuromuscular diagnosis can be referred to the center by the diagnosing hospital or their general practitioner. The majority of patients with severe neuromuscular diagnoses are referred to RCFM, and the center keeps records of almost the entire Danish population of patients with the diagnoses DMD, SMA II and ALS. The rehabilitation services offered by RCFM supplement the services offered by hospitals, private health providers and local authorities. The center is recognized as a specialized unit for neuromuscular rehabilitation by the Danish Ministry of Health. It is publicly funded, and its services are free of charge for its patients and partners. RCFM’s staff is made up of doctors, nurses, physical therapists, occupational therapists, social workers, coordinators, psychologists, rehabilitation researchers and communication officers. The center was founded in 1976 by the Danish patient organization for NMD, Muskelsvindfonden, which appoints its members of the board. RCFM collaborates with Muskelsvindfonden on various projects and represents the organization in international research networks. RehabilitationRCFM defines rehabilitation as a collaborative process which aims to ensure that the individual person with NMD makes the most of his or her physical, mental and social resources. It is essential that rehabilitation goals are set together with the patient and the local providers and authorities who are involved in his or her case. What we do RCFM is dedicated to getting to know our patients and learning about their everyday and social lives at home, at school, at work, leisure activities, etc. RCFM seeks to include the most important providers within health, social services, education and the labor market who are involved with the patient and his or her family in its rehabilitation services. Rehabilitation plan One of RCFM’s core services is the rehabilitation plan which gives a holistic description of the patient and offers a plan of action to increase the patient’s independence and optimize his/her life situation. The plan is usually based on a physical examination and an interdisciplinary meeting with local providers. Transitional services RCFM helps families and young adults prepare for new stages of life, e.g. moving from day care to school, from secondary school to upper secondary education, choosing a career path, moving away from home, starting a job on special terms or applying for an early retirement. Counseling We help the patients find solutions to specific problems with accessibility at home, assistive devices, new treatments, etc. and offer psychological counseling in times of crisis when life with a severe physical disorder becomes too complicated. Workshops RCFM arranges a variety of workshops for families and local providers and professionals. Workshops are either themed around a specific diagnosis or patient group, e.g. newly diagnosed adults or children starting school. Attendants learn about the diseases, treatments and coping mechanisms and receive practical information about living with NMD. At our family workshops which are typically held during weekends, families with NMD get a unique opportunity to share life experiences and establish networks with other patients and families. ALS team The rapid progression of ALS requires specialized coordination of the rehabilitation effort. RCFM’s team of ALS consultants coordinates this effort working closely together with hospitals and local providers. RCFM offers to arrange home visits and interdisciplinary meetings with the patient, his or her family and e.g. the home health nurse, local therapists (physio, occupational, speech), social workers and the GP. to write reports and draw up rehabilitation plans to solve specific problems with assistive devices, practical help and accessibility in the home psychological counseling of the patient or his/her relatives participation in team meetings with the hospital ALS teams to ensure that care plans are followed up locally information and education of local health providers workshops for ALS patients and their families ResearchWith the establishment of RCFM’s Research Centre in 1985, RCFM has been able to accumulate, generate and communicate knowledge about the physical, mental and social implications of NMD, about assistive devices, education and treatments which have resulted in improved rehabilitation of RCFM’s patients. An example of this was the introduction of ventilator treatment to patients with DMD which has improved their quality of life and prolonged life expectancy considerably. Since its establishment, RCFM has worked closely together with international scientists and clinicians and thereby contributed to keeping Danish clinicians and patients abreast of the latest research and treatment methods. The collaborative efforts with European and American scientists and clinicians have been systemized and intensified through our membership of the European Neuromuscular Centre (ENMC) and Treat-NMD. As Danish neuromuscular populations are rather small, the Research Centre sometimes teams up with rehabilitation units and patient organizations abroad to conduct studies on larger cohorts. Recently, RCFM partnered with seven European countries on the CARE-NMD project for Duchenne muscular dystrophy. The Research Centre coordinates and co-authors the Scandinavian Consensus Programs which describe best-practice care in Denmark, Sweden and Norway. The documents are revised bi-annually in connection with the inter-Scandinavian conference Brickless Centre arranged by the Research Centre.