Newly diagnosed?
If you or your child have been diagnosed with a neuromuscular disease, it’s vital to have access to the right information and advice. We’re here to help and support you and your family.
Life-long counselling and guidance through life with a neuromuscular disease
RCFM is a rehabilitation hospital without beds founded by the patient organization Muskelsvindfonden. Individuals and families who live with neuromuscular diseases can get life-long counseling and guidance from us. We also offer information about neuromuscular diseases and their implications to your or you child’s health care providers, school, workplace, etc.
RCFM’s team of counsellors is made up of doctors, occupational therapists, physiotherapists, social workers, nurses and psychologists
The center is recognized as a specialized unit for neuromuscular rehabilitation by the Danish Ministry of Health. We are funded by the Danish regions, and our services are free of charge for our patients. RCFM don’t make diagnoses or carry out treatments.
To get help from RCFM, you must ask your hospital physician or your family doctor for a referral.
How can RCFM help me?
Here you can read about some of the services provided by RCFM. Whenever you need help with something related to your or your child’s diagnosis, you’re welcome to contact us. Sometimes the problem can be solved over the phone, sometimes it’s better to meet face to face.
-
If you or your child is new with the diagnosis or if you experience functional loss that makes it difficult for you or your child to participate in everyday life, our consultants can meet with you and your family to discuss possible solutions.
Depending on the nature of the problem, we invite the professionals you receive help from in your local area to help find the best possible solution. It can be people like you or your child’s social worker, physical therapist and/or school teachers.
Meetings will usually be held in your home or at the place where you or your child experience the problems, for instance your child’s daycare facility or school or your workplace.
-
A physical evaluation is a report that describes your or your child’s present functional level and gives a prognosis for the progression of your or your child’s disease. The report also describes the current treatment and may suggest new interventions.
If you or your child need help from the social and health system to compensate for your functional level, the report can be used to document your needs.
Physical evaluations are usually carried out at one of RCFM’s clinics in Aarhus and Høje Taastrup.
-
RCFM’s team of psychologists and family counsellors offer counselling if you or your child in need help to cope with the disease or challenges related to the disease.
-
RCFM has a task force for motor neuron diseases (ALS, PLS and PMA). The team’s consultants know which and when interventions are required to be at the forefront of the rapid progression of the diseases.
The team offers home visits and network meetings, education for local therapists and carers, and psychological counselling.
-
Once a year, we invite you and your son to our clinic in either Aarhus or Høje Taastrup for a physical evaluation and a talk about how your son and the family are coping with the disease.
Before the visit, we will ask you if there are questions or problems that you would like to discuss at the meeting. It can be questions about school, friends, accessibility, loss of function, help, etc.
After the visit, our counsellors will make a short report about your son’s current functional level and recommendations for possible interventions.
-
In RCFM we believe that the more our patients know about their disease, the better they will be able to cope with it.
At our family workshops and seminars, RCFM’s counsellors teach patients and their families about the basic mechanisms behind the neuromuscular diseases –
- why do symptoms occur
- what can you do to postpone them and
- how can symptoms be alleviated with treatment and assistive deivces?
You will also learn to cope with possible psychological reactions.
If you belong to the target group of a workshop or seminar, you will automatically be invited to participate. All courses and seminars are taught in Danish.
You can get information about your diagnosis in your own language
TREAT-NMD is an international network of clinicians, scientists, patient advocacy groups and the biomedical industry that aims to accelerate the development of research and therapy, increase international collaboration, and improve patient care.
On the TREAT-NMD website, you can find information about the neuromuscular disease and their development, family-friendly guides to diagnosis and treatment in several languages, and news about research. You can also find information about patient organizations in different countries.
RCFM collaborates with TREAT-NMD on its global registries. With the consent of our patients, we send disease information to the registries in which clinicians, scientists and the biomedical industry can find eligible participants for clinical trials to test new drugs and treatments.
Our NMD specialists are ready
to help you
-
Alice Munk
Psychologist, ph.d.
[email protected] -
Alon Levy
Psychologist
[email protected] -
Ann Dorte Elkjær
Coordinator
[email protected]- Coordination of interdisciplinary meetings
- Administration -
Anne Bøgeskov
Psychologist
[email protected] -
Anne-Sophie Brandenborg
Coordinator
[email protected]- Coordinator of interdisciplinary meetings
- Patient education planner -
Annette Faber Mahoney
Communications and development, MA English, MA medical anthropology
[email protected]- WebeditorLæs mere
- Translation
- Research communication -
Bente Kristensen
Physiotherapist
[email protected]- Respiration
- Exercise
- Public health
- Assistive devices
- Tænder og mund problemer ved NMD -
Birgitte Heiden
Physiotherapist
[email protected]- Exercise
- Assistive devices
- Respiration -
Charlotte Handberg
Professor
[email protected]- Rehabilitation and palliationLæs mere
- Patient involvement
- Interdisciplinary and intersectional challenges
- Students and supervision -
Hanne BækThorup
Coordinator
[email protected]- Coordination of interdisciplinary meetings
- Administration -
Heidi Aagaard
CEO and chief medical officer
[email protected]-MD, specialist in public health medicine -
Helle Bundgaard Lausten
Occupational therapist
[email protected] -
Helle Munkholm
Occupational therapist
[email protected]- Sitting posture
- School
- Assistive devices
- Transportation and home
- Socialmedicinske problemstillinger -
Inge Bjerregaard
Physiotherapist
[email protected]- Respiration
- Exercise
- Assistive devices
- Pain management
- Socialmedicinske problemstillinger
-
Karina Winther
Psychologist
[email protected]- Psychological development in children and youths
- Cognitive functions
- Sexual counsellor
- Grief and crisis -
Katrine Haugen Larsen
Psychologist
[email protected] -
Kent Nyeland Sandholt
Department Manager, Jutland-Funen
[email protected] -
Kirsten Løvegaard
Physiotherapist
[email protected]- Sitting posture
- Exercise
- Assistive devices -
Kristin Allergodt
Ph.D candidate, PT, MSc
[email protected] -
Kristina Obitsø Aabo
Social worker
[email protected] -
Laila Lindhardt
ALS counsellor, occupational therapist
[email protected]- Assistive devices
- Transportation and home
- Welfare techonology -
Lene Busk
Physiotherapist
[email protected]- Respiration
- Exercise
- Assistive devices -
Lene Klem Olesen
Ph.D, MA educational psychology, occupational therapist,
[email protected]- Relatives and health professionals (ALS)Læs mere
- Palliative rehabilitation
- Online rehabilitation
- Qualitative method
-projektledelse og formidling
-
Linda Nielsen
Physiotherapist
[email protected] -
Lisbeth Sander Frid
Administrative specialist
[email protected] -
Lone Bech Christensen
Occupational therpist, MSc in rehabilitation
[email protected]- Sitting posture
- Dysphagia
- School
- Assistive devicesHjælpemidler
- Bil og bolig -
Lone Gertz
ALS counsellor, physiotherapist, MSC in rehabilitation
[email protected]- Respiration
- Assistive devices
- Dysphagia
- Exercise -
Lone Knudsen
Phycologist, ph.d, researcher
[email protected]- Pain and psychological factorsLæs mere
- Grief and crisis intervention -
Mads Jung-Jensen
ALS counsellor, nurse
[email protected] -
Maja Riberfelt
ALS counsellor, nurse
[email protected] -
Mathilde Lykkegård Mohrsen
ALS counsellor, nurse
[email protected] -
Merete Vægter
ALS counsellor, nurse, certified family counsellor
[email protected]- Respiration
- Nutrition, oral care, gastro-intestinal management
- Palliation, grief and crisis
- Family counselling -
Mette Makholm Pedersen
Physician, specialist in public health medicine
[email protected] -
Mie Ascanius Sørensen
Occupational therapist
[email protected] -
Nicolai Blom Pedersen
Administrative manager
[email protected] -
Pernille Diemer Hansen
Physiotherapist
[email protected]- Respiration
- Exersice
- Assistive devices
- Oral care -
Pia Zinck Drivsholm
Research assistant, PT, MSc
[email protected] -
Rikke Emilie Appelqvist Klintsø
Physiotherapist
[email protected] -
Runa Iversen
Occupational therapist
[email protected] -
Sanne Okkels Birk Lorenzen
Physician
[email protected] -
Sidsel Madsen
Consultant physician, specialist in public health medicine
[email protected]- Diagnoses and genetics
- Pregnancy
- Pharmacological treatmentbehandling
- Public health medicine -
Signe Versterre
Ph.D student, PT, MSc
[email protected] -
Sine Lyng Pedersen
Social worker
[email protected]- Job and economy
- Personal and practical help
- Disability compensation -
Sine Nydam Sørensen
Coordinator, BA
[email protected]- Coordination of interdisciplinary meetings
- Administration
-
Sofie Skoubo
Ph.d student
[email protected]- Teleprescence robots
- Policy
- Qualitative methods
- Project management and communicaton -
Stine Kaysen Moéll
ALS counsellor, nurse
[email protected]- Respiration
- Nutrition, gastro-intestinal and oral management -
Stine Løvind Thorsen
Department manager, Sealand
[email protected] -
Ulla Werlauff
Head of research, physical therapist, MSc, ph.d
[email protected]- Project management and supervisionLæs mere
- Measurement instruments
- Method
- Education
Suggested reading
-
About us
Read about RCFM, its history, services and research
Read more
