Important contact points on the topic of rare diseases
The Association for Children with Rare Diseases summarizes here the contact points we know of that deal with rare diseases. Please contact us Contact if you would like to report an additional contact point.
Active Communication
Adeli Medical Center (Slovakia)
AGILE.ch
AirAmour
Aladdin Foundation
allani Children's Hospice Bern
Angelman Association Switzerland
Working group per perception
AsFam
Assistance Exchange
Assistance Office ABĆ¼
Association of Swiss Psychotherapists (ASP)
Audio pedagogy.ch
avanti donne
Disability Forum
Professional Association for Early Remedial Education BVF
Professional Association HeilEurythmy
Education and care
Blindspot - Inclusion and Diversity Promotion Switzerland
buk - Association Education for Augmentative and Alternative Communication
Care.com Switzerland AG
Castillo Morales Association e.V.
Centre de coordination et de soins (CORAIL)
Centre Maladies Rares des HĆ“pitaux Universitaires de GenĆØve (HUG)
Centre Maladies Rares du Centre hospitalier universitaire Vaudois (CHUV)
Centro per le Malattie Rare della Svizzera Italiana (CMRSI)
CFS - Cystic Fibrosis Switzerland
CHIP - IG Phenylketonuria
Claire & George
Cranio Suisse
Crohn's Colitis Switzerland
Cuore Matto
Umbrella organization Hospices Switzerland
The other child
Debra Switzerland
Swiss-German Speech Therapists Association
Dreamnight at the Zoo
Duchenne Switzerland
easyCab AG
ELA Switzerland
Parents Forum Central Switzerland
Parents' Association for the Child with Heart Disease (EVHK)
Parents' Association for the Child with Liver Disease (EVLK)
EnableMe
enea21
Relief Service Switzerland
Occupational Therapists Association Switzerland
Eurokey
EURORDIS - Rare Diseases Europe
Specialized office for sexual education and counseling
Familyblues.ch
Family Bereavement Support
Vacation hotel Lake Constance
First Step
Federation of Swiss Psychologists (FSP)
Sanfilippo Foundation
Fontan Hearts Switzerland
Support association ClƩA
The "ClƩA Assistance Platform" creates a digital tool for people with disabilities and is intended to help affected persons and their relatives or caregivers with the challenge of administratively simplifying life with assistance.
Support association for children with rare diseases
Forum Rare Diseases (Austria)
FOXP1 International Foundation
The foundation sees itself as a link between FOXP1 families and science.
FRAGILE Suisse
Fragile-X syndrome
Galactosemia Switzerland
siblings-children.ch
Society of the Padovan method
Society for animal assisted therapy and activities
GigerMD
GSR Office
Rare Diseases Helpline (Inselspital Bern)
Helpline Rare Diseases (Kantosspital St.Gallen)
Rare Diseases Helpline (University Children's Hospital beider-Basel)
Rare Diseases Helpline (University Children's Hospital Zurich)
hilfefĆ¼rmich (Germany)
Hippotherapy Center
HSP Self-Help Group Switzerland
Huusglƶn
IG Special Children and School
IG Pallas
Immunodeficiency Switzerland
Inclusion Handicap
AHV-IV Information Office
Inselspital, University Hospital Bern
Insieme Parents Sofa
Insieme Switzerland
insieme21
INSOS
Integras Professional Association for Social and Special Education
intensiv-kids parents association
International Association for the Promotion of Basal Stimulation e.V.
InVIEdual
Self-help organization of people with disabilities who already live with assistance and have employed personal assistants.
JIAS Switzerland
JUBLA danceless
Kartagener syndrome and primary ciliary dyskinesia
KiDS-22q11 e.V.
KidsKidneycare Switzerland
Kinaesthetics Switzerland
Child+Hospital
Child and youth welfare centers
Children's Cancer Aid Switzerland
Children rehab Switzerland
Children's Hospital St. Gallen
Child loss.ch
Klinefelter Syndrome Switzerland
Conference of Associations of Parents of Disabled Children - KVEB
Contact point for parents with children without fingers / hand / arm
Kosys Ltd
Swiss Cancer League
LAKERIDE
Life With
Lola sherbet
Louis Bar Syndrome
LowVisionCenter
Lula Fund
Lung League
Lucerne Cantonal Hospital - Children's Hospital
Make-A-Wish Fondation
MaRaVal Upper Valais
Marfan Foundation Switzerland
Marie Meierhofer Institute for the Child
Meinplatz
Wilson's disease Switzerland
Music despite everything
Aftercare Clinic Tannheim (Germany)
Swiss Parks Network
Noonan Syndrome Switzerland
NP Suisse
Ortho Team AG
Eastern Switzerland Center for Rare Diseases
Palliaviva
Scout Movement Switzerland
physiopaed
Physioswiss
Pitt Hopkins syndrome
Plusport
Prader-Willi Syndrome Association Switzerland
Pro Infirmis
Pro Juventute
Per pallium
Procap
ProRaris
Pyramid Educational Consultants
Legal advice center UP
REHAKids
Remeda Allemann + Partner GmbH
Retina Suisse
Rett Association Switzerland
Ronald McDonald Children's Foundation
SAL - The professional association for speech and language therapists
SAM Suisse
SBH Switzerland
Divorce Counseling Centers
Swiss Professional Association of Applied Psychology (SBAP)
Swiss Paraplegic Association SPV
Swiss Registry for Rare Diseases (SRSK)
Swiss Federal Railways SBB
Swiss Epilepsy Foundation (swissepi)
Swiss Society for Porphyria
Swiss Society for Psychiatry and Psychotherapy (SGPP)
Swiss Muscle Society (muscle sick and strong)
Swiss Foundation for the Cerebral Palsy Child
Swiss Pro Mente Sana Foundation
Swiss Association of Parents of Hearing Impaired Children
Swiss Association for Congenital Immunodeficiencies (SVAI)
Swiss Association for Child and Adolescent Psychology
Swiss Association Osteogenesis Imperfecta
Swiss Professional Association for Music Therapy SFMT
Swiss professional association for maternal and paternal counseling
Swiss Feldenkrais Association SFV
Swiss Children's Spitex Association
Swiss Association of Osteopaths FSO / SVO
Swiss Association for Epilepsy (epi suisse)
Swiss Service Center (SDBB)
Swiss Red Cross
self-determination.ch
Self Help Switzerland
SELMAS Mastocytosis Switzerland
Serafe
SOGC Auxiliary consulting
SMA Switzerland
solicare AG
Sun for disabled children
Sonos
Social pedagogical family support SpFplus
Think of me foundation
Provides financial support to families of children with rare diseases to help them afford vacation and recreational activities, and maintains lots of info on the website for accessible recreational and vacation opportunities.
Emera Foundation
Foundation for the child at risk of leukemia
Foundation for people with rare diseases
Foundation KIFA Switzerland
Children's Hospice Foundation Switzerland
Mosaic Foundation
Pontas Foundation Switzerland
Profile Foundation - Work & Handicap
ProMobil Foundation
Foundation Swiss Center for Curative and Special Education
Sonnenhalde Foundation
Sunshine Foundation
Shooting Star Foundation
Perception Foundation
Wonder Lamp Foundation
Swiss Group for Inborn Errors of Metabolism (SGIEM)
Swiss Handicap
SZBLIND
Tanne Swiss Foundation for the Deafblind
TAR syndrome
TOMATIS
Tracheostoma-Children.ch
Transition1525
University Children's Hospital Basel (UKBB)
University Children's Hospital Zurich (KISPI)
University Center for Rare Diseases Basel
Association Kinder-Spitex Switzerland
Association Childcare Switzerland
Abri association
Association Disabled Travel Zurich
Dasein association - support at the end of life
EpiDogs for Kids Association
Association for Centronuclear Myopathies
Association shine time
Association hiki (help for brain injured children)
Heavenly Child Association
Association IIH Switzerland
Impulsis association
Association Crisis and Bereavement Support Switzerland
Association LEONA e.V.
Association liebi+
Association Lilli
Association More Life Basel
Association Mucopolysaccharidosis Switzerland
Network Heart Blood Association
Supports and accompanies families after strokes of fate.
Association space for siblings
Rainbow Switzerland Association
Association Accompanying the Seriously Ill (VSB)
Star talers association
Association Therapy Dogs Switzerland
Association for the Promotion of Apprenticeship Placement in Switzerland
Association - Swiss Group for Hippotherapy-KĀ®
Association of Academic Osteopaths Switzerland
Association Cerebral Switzerland
Association of Parents of Split Children (VES)
Association of Road Traffic Offices
Association Williams-Beuren Syndrome Switzerland
Promotes Exchange of information between affected families of children with Williams-Beuren syndrome. Supports the social integration of those affected and advocates for the protection of the interests and recognition of the rights of Rights of WBS persons.
Vesalius Ltd. - Myoreflex therapy
work+care
wunschambulanz.ch SAW
ZaZa Care - Dentistry for children with disabilities
ZaZa was specially developed for the needs of children with disabilities, their parents, caregivers and the treating professionals. Children with disabilities often have special problems with their teeth. Therefore, they also need special attention, treatment and support.