Social Networking and Support

The Potock-Shaffer Syndrome family community Facebook page -
https://www.facebook.com/PotockiShafferSyndromeFamilyPage?fref=ts

The Potocki-Shaffer Syndrome family private Facebook support group - 
https://www.facebook.com/groups/potockishaffer/

A very active and informative Hypotonia private Facebook support group -
https://www.facebook.com/groups/hypotoniaawareness/

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

 

Rare Disease registries and support

Chromosome Disorder Outreach (USA based) -
http://www.chromodisorder.org/

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 -
http://www.rarechromo.org/

Rare Disease Day, parents stories on living with rare diseases -
http://www.rarediseaseday.org/

Global Genes, a fantastic rare disease advocacy organization -
http://globalgenes.org/ 

The Mighty, stories and articles from parents and carers of special needs children -
http://themighty.com/

 

Clinical

The only clinical study into Potocki-Shaffer Syndrome (paywall) - 
http://onlinelibrary.wiley.com/doi/10.1002/ajmg.a.33245/abstract

Genetics Home Reference Potocki-Shaffer Syndrome information page - 
http://ghr.nlm.nih.gov/condition/potocki-shaffer-syndrome

Wikipedia - Potocki-Shaffer Syndrome -
http://en.wikipedia.org/wiki/Potocki%E2%80%93Shaffer_syndrome

OMIM entry -
http://omim.org/entry/601224

Office of Rare Diseases USA -
http://rarediseases.info.nih.gov/gard/9762/potocki-shaffer-syndrome/resources/1

 

Other Chromo 11 conditions

WAGR - Some deletions can cross into WAGR Syndrome -
http://wagr.org