Knowledge and Rehabilitation Centre for children and adults with multiple limb deficiencies

Cooperation

Cooperation with other experts in our field is a very important part of EX-Center’s work, as many of our patients have several complex diagnoses.
 
Local cooperation
EX-Center works closely with Rehab Station Stockholm, the Neuropediatric Clinic at Astrid Lindgren’s Children’s Hospital, the Hand Surgery Department at Södersjukhuset [Southern Hospital], the Children’s Orthopaedic Department at Astrid Lindgren’s Children’s Hospital, and with all of the orthopaedic engineers at the orthopaedic workshops having agreements with the Stockholm County Council. 

EX-Center’s coordinator is a member of the National Agency for Special Needs Education and Special Schools. This makes it possible for EX-Center to ensure that the special needs of children with multiple extremity deficiencies are met in the school environment. 

National cooperation
Because the team helps EX-Center patients with all kinds of problems in different parts of their lives, we have a great deal of cooperation with authorities and other social actors. We cooperate often with the Swedish Social Insurance Agency, the municipality, and the county council. We also work closely with various user organisations such as the Swedish Dysmelia Association, RTP-S [Swedish Association for Survivors of Accident and Injury] and DHR [the National Swedish Organisation for Disabled Persons].
EX-Center cooperates with clinics at several university hospitals as well as with children’s and adults’ habilitation clinics around the country. Examples of these are: 
Dysmelia and Arm Prosthesis Unit at Örebro University Hospital 
Treatment Group for Dysmelia and Arm Amputation [Abbreviated BEDA in Swedish], Skåne University Hospital, Malmö 
Arm Prosthesis Unit and Walking School, Sahlgrenska University Hospital, Gothenburg
Arm Prosthesis Centre, Sahlgrenska University Hospital, Gothenburg
Orthopaedic Clinic, Sahlgrenska University Hospital, Gothenburg
Specialist Team for Craniofacial  Malformations, Sahlgrenska University Hospital, Gothenburg

International cooperation
Nordic Interprofessional Forum for Dysmelia and Arm Amputations (2001).
EDRIC. EDRIC (www.dysnet.org) is a global network for people with congenital multiple limb deficiencies (dysmelia), and for people who work in the field of dysmelia.
Thalidomide Trust, England.
Paul O´Connell, MB, FRCPI. Physician who is building up a team for multiple extremity injured in Ireland, using EX-Center as a model. 
Janet McCredie, AM, MD, FRCR, FRANZCR. McCredie is a radiologist and expert on congenital skeletal deformities. She is the author of the book ”Beyond Thalidomide – Birth Defects Explained”, which is used by EX-Center as support in thalidomide assessments. 
Sophie Hoffman, psychologist, La Braise, Bryssel.

The Rehab team

Coordinator

Orthopaedic physicians

Occupational therapists

Physiotherapists

Psychologist

Health educator


834
838