It can be hard to find helpful information from people who fully understand the impact of dealing with hearing issues. Here’s a list of resources that we update on a regular basis. In addition to the resources below, you can also connect with others on our networks: Facebook, Twitter and Pinterest. And, if you’re looking to talk to someone specific to your condition, we can help connect you.
The benefits of bone anchored hearing systems vary greatly from person to person due to differences in hearing loss as well as listening preferences and lifestyle. A good way to gain insight into what life might be like with Ponto or another type of system is to talk to other users. Below are some useful links for getting connected to user organizations.
Bone anchored hearing systems:
Facebook – BAHA User Groups:
BAHA – Bone Anchored Hearing Aids
BAHA users Welcome!
BAHA-Bone-Anchored Hearing Aid
BAHA Support Group (Southern Africa)
Acoustic neuroma & single-sided deafness (SSD):
Acoustic Neuroma Association
US organization for people with acoustic neuroma and other benign tumors of the cranial nerves
British Acoustic Neuroma Association (Bana UK)
A support charity for those with Acoustic Neuroma
Acoustic Neuroma Association of Canada (ANAC)
The Acoustic Neuroma Association of Canada is a patient-headed, peer support group.
Facebook – Various SSD User Groups:
Deaf in One Ear? Yes.
Atresia, Microtia, Treacher Collins and Goldenhar Syndrome:
The Ear Community is a warm and supportive community for those who have any or all of the following: varying degrees of hearing loss, Microtia, Atresia, Treacher Collins or Goldenhar Syndrome.
Facebook – Various Microtia & Atresia User Groups:
Microtia Mingle UK
Teens/adults with microtia
A support charity for families and individuals affected by Goldenhar syndrome and related issues.
A support charity for families and individuals affected by Treacher Collins Syndrome.
Yahoo online discussion support group
This community is intended as a forum for people with, and parents of children with Aural Atresia and/or Microtia.
This is an ever-growing list. Help make it better by adding your suggestions. Please let us know what we should add in the comments section below or tell us on Twitter of Facebook.
Amie’s website https://www.treachercollins.org/tcs/Welcome.html is good website about a woman who is a doctor who was born with Treacher Collins and good support group on Facebook https://www.facebook.com/groups/2419901287/
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