• Slovenia- Patients and patient associations

Slovenia- Patients and patient associations

V Sloveniji deluje več društev, ki izdružujejo bolnike z redkimi boleznimi in njim ter njihovim svojcem nudijo podporo ter informacije. Nekatera izmed teh društev so:

There are several associations in Slovenia that provide support and information to patients with rare diseases and their families. Some of these associations are:

  • The Fabry Disease Patients Association of Slovenia
  • The Hereditary Angioedema Association (HAE) of Slovenia
  • Osteogenesis Imperfecta Patients Association of Slovenia
  • Society of Patients with Blood Diseases
  • Prader Willi Syndrome Patients Association
  • Gaucher’s Disease Patients Association of Slovenia
  • ZEBRA Patients Association
  • DEBRA Slovenia (Association of persons associated with bullous epidermolysis bullosa)
  • Haemophiliac Society of Slovenia
  • Heroes of the 3rd Floor Association (Association of parents of children treated in the haemato-oncology ward)
  • Cystic Fibrosis Association of Slovenia (CF Association)
  • Phenylketonuria Society of Slovenia
  • Society for Pulmonary Hypertension of Slovenia
  • Butterfly Thyroid Disease Relief Society
  • Duchenne Muscular Dystrophy Slovenia (DMD Slovenia)
  • European SATB2 Foundation, SATB2 Syndrome Foundation
  • CTNNB1 Foundation, a foundation for gene therapy research
  • The DiGeorge Syndrome Parent and Child Support Initiative
  • The ANGELMAN SYNDROME Parent and Child Support Initiative
  • Initiative to support parents and children diagnosed with Beckwith-Wiedemann Syndrome
  • An initiative to support parents and children diagnosed with CHARGE syndrome
  • An initiative to support parents and children diagnosed with craniosynostosis
  • Parent and Child Support Initiative for the diagnosis of rare chromosomal abnormalities
  • Support initiative for parents and children diagnosed with Williams syndrome
  • Initiative to connect patients with fibrous dysplasia of the bone
  • Initiative to connect children with 1p36 deletion syndrome and their parents
  • Linkage initiative for children with early-onset epileptic encephalopathies and their parents
  • Initiative to connect parents of children with undiagnosed diseases
  • An initiative to connect parents of children with the rare genetic disease Incontinentia pigmenti
  • Initiative for the creation of an association of women diagnosed with Turner syndrome
  • Initiative to bring together patients with KRBS type 2
  • Initiative to unite patients with Poland syndrome
  • Kangaroo Disability Association
  • Marfan syndrome and related disorders
  • Children’s Section of the Slovenian Transplant Society
  • Support for patients with pheochromocytomas and paragangliomas
  • Autoimmune Hepatitis Section of the Chronic Inflammatory Bowel Disease Society
  • Slovenian Association of Lymphoma and Leukaemia Patients, L&L
  • IDefine Europe Foundation (focus on Kleefstra syndrome)
  • Myasthenia Gravis (MG) and Congenital Myasthenic Syndrome (CMS) Patients Association
  • Rare Diseases Association of Slovenia
  • Association of Patients’ Organisations of Slovenia (ZOPS), Rare Diseases Section