Social Networking and Support

The Potock-Shaffer Syndrome family community Facebook page -

The Potocki-Shaffer Syndrome family private Facebook support group -

A very active and informative Hypotonia private Facebook support group -

Bringing Up Betty, a podcast featuring insightful stories of special needs families (created by a PSS mom)
Subscribe to the Podcast here 


Rare Disease registries and support

Chromosome Disorder Outreach (USA based) -

Unique (UK based) is a fantastic resource and support for families with a chromosomal disorder, if you register you can gain access to many Facebook based support groups -

Rare Disease Day, parents stories on living with rare diseases -

Global Genes, a fantastic rare disease advocacy organization - 

The Mighty, stories and articles from parents and carers of special needs children -



The only clinical study into Potocki-Shaffer Syndrome (paywall) -

Genetics Home Reference Potocki-Shaffer Syndrome information page -

Wikipedia - Potocki-Shaffer Syndrome -

OMIM entry -

Office of Rare Diseases USA -


Other Chromo 11 conditions

WAGR - Some deletions can cross into WAGR Syndrome -