SPINA BIFIDA ASSOCIATION OF THE MID-ATLANTIC REGION
Serving Washington D.C., Maryland, Virginia & West Virginia
Executive Director: Libby Riordan 202-618-4739
lriordan@sbaa.org
Chesapeake-Potomac Spina Bifida, Inc. 888-733-0988
https://www.spinabifidaassociation.org/chapter/spina-bifida-association-of-the-midatlantic-region/about/
Spina Bifida Association of America
http://www.sbaa.org/
Provides medical, research, educational updates and publications
SB-You is our signature online education program
https://www.spinabifidaassociation.org/education/sb-you/
The webinar sessions are free of charge and can be viewed anytime.
Lifestyle Accelerator
http://www.chesapeakespinabifida.org/www.lifestyleaccelerator.com
Discussion board on a variety of topics from health to fashion, forums and blogs for individuals with spina bifida.
Spina Bifida.Net
http://www.spinabifida.net/
Provides general information about spina bifida and links to information
National Spinal Cord Injury Association
http://www.spinalcord.org/
National organization with national and local resources, conferences, research on spinal cord injury and disease.
FIND A CLINIC
https://www.spinabifidaassociation.org/clinics/
Kennedy Krieger Institute
http://www.kennedykrieger.org/
Philip A. Keelty Center for Spina Bifida and Related Conditions
801 North Broadway, Baltimore, MD 21205, 443-923-9130
Ages served: All
FACEBOOK GROUPS
Chesapeake-Potomac Spina Bifida, Inc.
Facebook: https://www.facebook.com/SpinaBifidaMAR
Adults with Spina Bifida Private group 1,886 members
https://www.facebook.com/groups/1413003032263589/?source_id=78483042018
This is a closed group for adults with Spina Bifida.
SB Latino Private group 149 members
https://www.facebook.com/groups/667266733355048/?source_id=78483042018
SB Latino de la Asociación de Espina Bífida es donde la comunidad Latina comparte y conversa acerca de su vida con Espina Bífida. Para más información - www.spinabifidaassociation.org/sblatino
Spina Bifida Parents Facebook Group
https://www.facebook.com/groups/601772426532557/?source_id=78483042018
Private group 4,354 members
Parents of Adults with Spina Bifida
https://www.facebook.com/groups/362591890874413/?source_id=78483042018
Private group 100 members
This is a closed group for parents, caregivers, and supporters of adults (18+)
E_COMMUNITIES
bifida-chat
http://groups.yahoo.com/group/bifida-chat/
List serve for people whose lives are affected by spina bifida.
bifida-l
http://groups.yahoo.com/group/bifida-l/
List serve started in 1995 at Dakota State University. Currently has over 300 members
Nursing and Healthcare Professional Council's (NHPC)
http://sbaa.convio.net/site/PageServer?pagename=sbaa_nhpclist
The purpose of this list is to provide an online discussion resource for nurses, nursing students, physical therapists, occupational therapists, and other health care personnel who are routinely involved in the treatment and care of individuals with spina bifida.
sb_adults
http://groups.yahoo.com/group/sb_adults/
List serve for adults with spina bifida age 18 and over
SB Parents ListServ
http://www.sbaa.org/site/PageServer?pagename=SBparentlistserv
Listserv is for any parent of a child who has spina bifida. Use the SB Parents list to exchange ideas, resources, debate, and have some great discussions.
SB Teens
http://_sb_teens.homestead.com/
List serve on the Internet for teens with spina bifida
Spina Bifida Central
http://clubs.yahoo.com/clubs/spinabifidacentral
A club for individuals with spina bifida: chat room, message board, and news
Spina Bifida Connection
http://www.spinabifidaconnection.net/
A Free online discussion group for individuals affected by spina bifida.
Youth and Adult Alliance (YAA)
http://www.sbaa.org/site/PageServer?pagename=YAAListserv2
The YAA is a link for adults with spina bifida, young and old, to communicate with each other about a wide range of issues of common interest.
YAA BLOG
http://sbaa.pointinspace.com/yaa/?AddInterest=1024
Link into the Spina Bifida Community. You'll meet fascinating people, learn about the latest treatments and research and find out about the most recent events that affect adults of all ages living and thriving with spina bifida. The YAA BLOG is updated regularly so visit often.