The MECP2 Duplication Syndrome Family Talk Facebook Group
This is a private Facebook group that links approximately 750 individuals from families affected by MECP2 Duplication Syndrome from around the world. Some members of the group are regular Facebook users while others become Facebook members solely to access the family talk group. Group members share practical information and social support.
Parents, Grandparents, Siblings, and other relatives of children or adults with MECP2 Duplication Syndrome are welcome to join the group. Since family can be loosely defined, parents and guardians can choose to extend memberships to friends, caregivers, or others who they consider to be part of their families. Decisions about these “extended family members” are up to the parents or guardians of the individual with the syndrome.
Researchers or professionals in health, education, or other disciplines who are working in this field may request membership. These requests will be discussed among group members via the Facebook group, and approved only if their is strong support for confirming membership.
To join the group, you need to follow these steps:
- If you haven’t already joined facebook, you need to become a member.
- Sign into facebook and go to https://www.facebook.com/home.php?sk=group_122306981133980 or use the Facebook search window for MECP2 Duplication Syndrome Family Talk
- At the top of the page in the header, it says closed group and there is a white rectangle that says Join Group , click on it.
- You can follow 1 or 2 below. (Most people find number 1 to be the easier option.
- Once you have clicked on Join Group as described in steps 1 through 3, send an e-mail message to firstname.lastname@example.org requesting to join the group. You will get a return e-mail requesting information about your family connection, so that your membership can be confirmed. OR USE OPTION B.
- Once you have clicked on Join Group as described in steps 1 through 3,, you should receive a Facebook message in a few days asking you to confirm that you are a family member. You will need to reply to that message so that your membership can be confirmed. IMPORTANT PLEASE NOTE: Depending on your Facebook privacy settings, this message will not be in your regular Facebook messages. Normally only messages from Facebook friends show up there. Others are under “Message Requests” at the top of the message menu as seen here.
You need to click on message requests to find these messages… notice it is hard to see here. Please check these message requests to look for this message.
Some Other MECP2 Duplication Syndrome Facebook Groups
There are several other related Facebook groups and some individuals may wish to connect with more than one group.
UK MECP2 Duplication Syndrome Support Group This group connects family members primarily in the United Kingdom.
Duplication MecP2 France is a French language site connecting families.
MeCp2 Duplikationssyndrom Xq28 duplikation i Norden is group of relatives of the boys / girls with MeCP2 duplication syndrome in Scandinavia. It is primarily in Swedish.
Mecp2 Spectrum disorder Australia This group connects family members primarily in the Australia.
MECP2 Duplikationssyndrom Deutschland is a German group
Asociación Miradas que hablan Duplicación MECP2 España is a large Spanish language group for families and friends of individuals with MECP2 Duplication.