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“Our aim is to contribute to the target groups’ coping with

Welcome to Ågrenska ”We provide programs for children and adults with diseases and or disabilities their families and professionals concerned”. “Our aim is to contribute to the target groups’ coping with everyday life and empower them with a holistic approach

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“Our aim is to contribute to the target groups’ coping with

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  1. Welcome to Ågrenska”We provide programs for children and adults with diseases and or disabilities their families and professionals concerned” • “Our aim is to contribute to the target groups’ coping with • everyday life and empower them with a holistic approach • to become as independent as possible”

  2. Ågrenska of today inaugurated 1989 Anders Olauson initiator of Ågrenska of today and H.M. Queen Silvia

  3. Target groupsdifferent perspectives and needs Mothers Professionals Fathers Adults with diagnose Other relatives Siblings Children with diagnose

  4. The reality of a family > 40 contacts Hospital Physio-therapist Birth-department GP Psychologist Neurologist Personal-assistans Neighbours Social- insurance system Social network Friends Medicines Relatives Pre-school Junior-school Home equipment and adaptations Housing-support Special-school School Other authorities School-nurse Technical support

  5. The reality of a family Hospital Physio-therapist Birth-department GP Psychologist Neurologist Personal-assistans Neighbours Social- insurance system Social network Friends Medicines Relatives Pre-school Junior-school Home equipment and adaptations Housing-support Special-school School Other authorities School-nurse Technical support

  6. Development process - empowerment

  7. Programs Main programs: • Family stays • Adult stays • Respite care • Daily occupation • The Agrenska Academy

  8. Finances - revenues

  9. Family Program • 21 stays per year • a different diagnosis each time • rare diagnoses, 1/10 000 • the whole family • from all over Sweden

  10. Parents´ program • Specially directed programs related to each separate diagnose • Lectures, descriptions of consequences, exchange of experiences, reflection

  11. Documentation - Newsletter

  12. Effects – parents tell • feel normal • get energy, feel stronger • knowledge gives security • get understood • shared experience as important as expert information

  13. Scientific study Agrenska family program The passive reliance decreased for both mothers and fathers. Tidskrift: Journal of Advanced Nursing, Vol. 53.4. Sid. 392-402, Artikelns titel: Stress and well-being among parents of children with rare diseases: a prospective intervention study, Författare: Lotta Dellve tillsammans med Lena Samuelsson, Andreas Tallborn, Anders Fasth och Lillemor Hallberg

  14. Prader Willi Angelman Asperger Tourette Achondroplasi Cornelia de Lange Silver Russel Fragile X Congenital Dystrophia Myotonica Ehlers Danlos Marfan Turner Charge Möbius Treacher Collins 22q11 deletion/ CATCH 22 PKU/ Phenylketonuria Galactosemia Klinefelter Neurofibromatosis Noonan Osteogenesis imperfecta Rubenstein Taybi Sotos Sturge Weber Tuberous sclerosis William Albinism Becker Crouzon LMBB Cri du chat CDG – Congenital Disorders of Glycosylation Hereditary spastic paraplegia Example of diagnoses

  15. Agrenska Academy

  16. International outlook • Agrenska family programs: • Denmark • Spain • Portugal • Italy • Argentina • Australia • Already running: • Estonia

  17. Future Challenges • How to meet the need of healthcare and competence among: • Persons with rare diseases • Relatives • Professionals • How shall we achieve a good coordintion between knowledge and diciplines/professionals that meet people with rare diseases in Sweden?

  18. Future Challenges Mothers • Are to improve the: • Knowledge/Competence • Coordination • Cooperation Professionals Fathers Adults with diagnose Other relatives Siblings Children with diagnose

  19. Together we create the future!

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