FAMILY SUPPORT GROUPS

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AЯRE ASXL1 Parent Support group

  • To connect families of children with Bohring-Opitz Syndrome

  • Provide and exchange numerous types of information among parents and caregivers,

  • To increase international awareness of Bohring-Opitz Syndrome,

  • To extend knowledge and informational resources to medical professionals who treat children with Bohring-Opitz, and

  • To encourage and promote continued research in order to improve the quality of life of our children.

https://bohring-opitz.org

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AЯRE ASXL2 Parent support group

This group is for the patients and/or families of those with Shashi-Pena Syndrome (ASXL2). The group is for the purpose of getting to know one another and offer support. https://www.facebook.com/groups/19723492443779


Please contact Teresa Miller Locklear to join the ASXL2 Parent Support Group.

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AЯRE ASXL3 Parent support group

The group offers advice, health and development information, and encouragement.

https://www.asxl3.com

 

Bohring-Opitz Syndrome Foundation

The Bohring-Opitz Syndrome Foundation exists to: 

  • Help families and patients affected by BOS through family assistance programs

  • Support research that increases the medical community’s knowledge about BOS and its best treatments

  • Teach and share knowledge about BOS, and its best practices and treatments

  • Increase a sense of community surrounding BOS

Programs include: 

  • Annual BOS Meet-Up

  • Birthday Club, Welcome Packages, and Sympathy Gifts

  • Awareness Day Campaign including distribution of awareness products

  • Participation in Rare Disease Organizations and conferences such as National Organization of Rare Diseases and Global Genes

  • Exhibiting at medical conferences

For more information please visit: http://bos-foundation.org/