Get Involved

FOLLOW THE PMS FOUNDATION ON FACEBOOK AND TWITTER

Facebook


Twitter

 

LOOKING FOR FAMILIES IN YOUR AREA?

CONTACT A REGIONAL REPRESENTATIVE HERE

 

The Regional Representatives are a more local resource for families. They can help families network and provide guidance for information regarding state medical and therapy services. They typically plan a local gathering on odd numbered calendar years. A Regional Representative can also help find family contacts more local to your home area.

 

SOCIAL NETWORKING/FAMILY SUPPORT


The family discussion groups on Facebook and Yahoo have been very successful! These groups have become a life-line for many of our families. Family members are our best support as most doctors are not even aware of PMS. The groups provide a private format where our families can discuss sensitive medical topics, share success, and build relationships.


Yahoo groups

English

http://health.groups.yahoo.com/group/22q13/

French

http://health.groups.yahoo.com/group/22q13Francais/


Facebook

English

https://www.facebook.com/?ref=tn_tnmn#!/groups/22Q13PMS/

Spanish

https://www.facebook.com/groups/263402830401152/

French

https://www.facebook.com/groups/PMS22q13.FR/

German

https://www.facebook.com/groups/113959178655020/

Scandinavia

https://www.facebook.com/groups/283842441683241/?fref=ts

Netherlands

https://www.facebook.com/groups/352154061529074/

Poland

https://www.facebook.com/groups/pms.poland/

Brazil

https://www.facebook.com/#!/groups/544830615583402

Portugal

https://www.facebook.com/groups/PhelanMcDermidPortugal/

Italian Association

https://www.facebook.com/#!/pages/Associazione-Italiana-Sindrome-di-Phelan-McDermid/481171518584067

French Association

https://www.facebook.com/#!/LauraDePhelanMcDermid

Sibling Page (For those who have a sibling with PMS)

https://www.facebook.com/groups/235641426511010/


Web sites

Italian Association

http://www.aisphem.org/

French Association

http://www.lauradephelanmcdermid.com/

French

http://lemondedecamille.free.fr/

Spanish Association

http://www.22q13.org.es/

 

IMPORTANT: PRIVACY AND CONTENT (Within Our PMS Family Support Groups)

Please note that the Facebook groups are CLOSED groups. Our content is not visible to outsiders to ensure family privacy. The intent is for families to discuss challenges they may face during their everyday lives and/or to seek advice and share successes or stories. Families may also share the latest and greatest updates with regards to research and fundraising. We ask our families to be mindful when recommending people to join the groups. The groups should remain a "safe place" for our families to share and discuss topics. Most of the content shared in the Support Groups are 3rd party discussions. The PMS Foundation is not responsible for the topics or content discussed and cannot guarantee the accuracy of the content. You should always consult the advice of your doctor before beginning any sort of medical treatment.

 

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Last Updated on Monday, 21 November 2016 22:46
 
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