In the company of Her Majesty Queen Silvia of Sweden, celebrations were held in June to mark the twentieth anniversary of Agrenska, a non-profit organisation which has been providing unique services in Sweden to children and adults with disabilities since 1989. Rare disability and its impact on the family is the principal interest of the foundation, which bills itself as a national centre of competence for rare diseases and is organised and managed in part by disabled persons. The centre, which has Special Consultative Status with the Economic and Social Council of the United Nations, features a family programme, an adult programme, respite care, a consultant for attention deficit hyperactivity disorder, a family support unit, a learning programme for professionals, and personal assistance. The organisation offers expertise in paediatric and adult rare disabilities, and provides educational and vocation training. Agrenska works to build knowledge and skills amongst specific target groups. Chaired by Anders Olauson, (former president of the European Organisation for Rare Diseases (EURORDIS) and current president of the European Patients’ Forum), the Agrenska centre offers programmes and services for children and adult rare disease patients, as well as for families, and for health professionals involved with patients. The family programme includes all members of the family and provides a venue for those families coping with the same rare disease to come together. The week-long programmes focus on one disease at a time and invite the professionals working with the participating children to attend for two days of interchange. International experts are also often invited. There are informational sessions for parents as well as a programme geared to the siblings of patients. For the children and their siblings, a balanced schedule of educational and leisure activities is devised. These family programmes occasionally serve as the backdrop for an international conference on a specific disease or set of diseases.
Weekend respite care and summer camp
Amongst the services available at the Agrenska centre are the respite service and summer camp programmes. The respite care programmes are offered weekends and during school holidays and are available to children and adolescents with a variety of impairments - physical, cognitive and behavioural. Attendees are organised into groups as homogeneous as possible and gather regularly once a month, thus allowing the opportunity to encounter the same participants and staff team each time. Each group has a set of goals that contribute to enhancing independence and self-determination. The programmes allow participants to work on social skills and friendship development while learning more about their disability. The summer camps are week-long events and include participants from the weekend groups. Some participants stay for two weeks. There are also day camps for younger children. These programmes permit the families to have some time away from the daily responsibilities of caring for a member with a rare disease.
The adult programme
In 2005 Agrenska branched out with its Adult programme. This unique model, held in tandem with the country’s national association for rare diseases, Riksforbundet Sallsynta Diagnoser, and financed in part by the Swedish inheritance fund, brings together patients with the same disorder for four-day informative workshops. Patients learn about and discuss the medical, social, educational, and psychological elements of their condition. There are six different workshops held per year. The overall aim of these workshops is to enhance the coping skills of rare disease patients by arming them with tools and knowledge. Information from these events is gathered and published online for the benefit of other patients with the same disorder as well as for the professionals working with patients. Workshops have been held for Ehlers-Danlos syndrome, Marfan syndrome, Turner syndrome, neurofibromatosis, PKU, Noonan syndrome, CATCH 22, Prader-Willi syndrome, congenital limb deficiency, Klinefelter syndrome, Gaucher disease, and arthrogryposis multiplex congenita. Participants report feeling empowered and better prepared to handle their everyday lives following these programmes.
The Estonian Agrenska Foundation
Located in Tartu county, the Estonian Agrenska Foundation was founded by several sources including Agrenska Sweden, the University of Tartu, the Estonian Board of Disabled People, the Tartu University Hospital Foundation, and Stenstroms Skjortfabrik Eesti, a shirt manurfacturer. Like its Swedish counterpart, the Estonian Agrenska Foundation targets the family, offering a family-centred counselling system that covers all of Estonia and focuses on families of children with disabilities, offering psychosocial, educational and medical information and support. The centre is housed in the Tammistu manor, which was generously donated by the Stenstrom family. Anders Olauson also serves as chairman for this centre.
A published study conducted by researchers from the department of economics at the University of Gothenburg determined that the Agrenska approach to rare disease care is cost effective. The study, appearing in the review PharmacoEconomics, found a "three-fold decrease in direct and indirect healthcare costs" for those families participating in Agrenska Centre programmes versus those that use only traditional routine support services. Spain, Argentina and Australia are currently developing centres based on the Agrenska model and several other countries are in discussions. Agrenska’s role in the United Nations reflects its understanding of the common issues all rare disease patients and their families share.
“No matter which country they are from," observed Anders Olauson in a recent interview with OrphaNews Europe, "For a family with a child with a rare disorder, the impact from a holistic perspective is essentially the same.”
For further information on Agrenska