Patient Organisations & Support Groups

We already connect around 922 affected families and give them unforgettable moments of happiness. Since our foundation, we have welcomed more than 12,500 guests of all ages to free family events throughout Switzerland. In addition, 880 parents are actively involved in the KMSK self-help group on Facebook!

Rare diseases in Switzerland - Support association for children (in German, French, Italian and English)

Please get in touch using the contact form.

You have a child with Williams-Beuren syndrome – so do we. Nine months, the length of a pregnancy! Nine months full of anticipation for your child, your little brother or sister. You imagine their face, their expressions, their character and, yes, even their future.

But then, one day, just one day, you find out about their disability. Your family's everyday life is turned upside down and you are plunged into a world you never knew before.

Welcome - Williams-Beuren Syndrome Switzerland (in German and French)

Please get in touch using the contact form (at the bottom of the website). 

SBH Switzerland is an association that supports people with congenital spina bifida and congenital hydrocephalus.

SBH Switzerland – Spina Bifida and Hydrocephalus Switzerland (in German)

Please get in touch using the contact form.

We are happy to help affected families get in touch with other families in a similar situation or with a similar history.

Noonan Syndrome Switzerland - Noonan Syndrome (in German)

Please get in touch using the contact form.

We provide information, advice and support to parents, relatives and friends of people with Angelman syndrome. Our aim is to promote exchange between researchers, practitioners and affected families.

Angelman Association Switzerland (in German) 

Please get in touch using the contact form.

MaRaVal – maladies rares valais – rare diseases valais is a non-profit cantonal patient organisation. It was founded in August 2017 and is based in Sion.

MaRaVal Rare Diseases Valais - MaRaVal (in French and German)

Please get in touch using thecontact form.

Phelan-McDermid syndrome – also known as deletion 22q13 (loss of part of the long arm of chromosome 22) – is a rare genetic defect.

Notable symptoms include delayed psychomotor development, impaired speech development and certain physical characteristics. To date, this diagnosis has been made approximately 3,000 times worldwide.

Phelan McDermid Society | German-language platform for Phelan McDermid syndrome

Please get in touch using thecontact form.

Epi-Suisse is the Swiss patient organisation that supports adults and children with epilepsy and their families.

As a non-profit organisation, we focus on the social and psychosocial consequences and concerns of those affected and provide support, guidance and advice to patients and their families through a wide range of services.

Home page – Epi Suisse (in German, French and Italian)

Please get in touch using the contact form.

AEMO is an association founded in 2004 with the aim of organising fundraising campaigns to help families with a child suffering from a rare disease and to provide them with material and psychological support during this difficult time.

AEMO - Association Enfance et Maladies Orphelines | AEMO | Association Enfance et Maladies Orphelines

  (in French - some documentation in French, German and English)

Please get in touch using the contact form.

Rare diseases don’t cure themselves. Developing genetic medicines is a complex, expensive effort with many moving parts. We are the organization orchestrating this global effort, and here is our plan to cure Rett syndrome.

The Rett Syndrome Research Trust (RSRT) is the patient advocacy organization working to cure Rett syndrome.

Join the Rett Syndrome Cure Community