For those affected by specific diseases and syndromes, connecting to support networks and understanding the latest in treatment and care can make a significant difference. Below is a curated list of online resources, focusing on support, treatment options, and educational information for various conditions.
Ear-Related Diseases
- Acoustic Neuroma:
- The University of California, San Francisco provides in-depth information on acoustic neuroma at UCSF’s site.
- The Seattle Acoustic Neuroma Group offers support and resources in English on their website.
- For residents in Canada, the Acoustic Neuroma Association of Canada offers further resources at anac.ca.
- Meniere’s Disease:
- The Meniere’s Online Support Group provides support and community resources for individuals and families affected by Meniere’s Disease.
- The Ear Surgery Information Centre offers more technical and medical information at earsurgery.org.
- Neurofibromatosis:
- The National Neurofibromatosis Foundation offers a comprehensive guide to neurofibromatosis resources at nf.org.
- The Neurofibromatosis Association in the UK provides further details on their website.
- Otosclerosis:
- For those seeking information on otosclerosis, the Ear Surgery Information Centre provides detailed medical insights at earsurgery.org.
- Boystown Hospital has parent-oriented information on otosclerosis at boystownhospital.org.
- Perilymph Fistula:
- The eMedicine platform offers articles and research on this rare condition, which can be accessed here.
- Rubella (German Measles):
- The Texas School for the Blind and Visually Impaired has extensive information on rubella at tsbvi.edu.
- The Canadian Deafblind and Rubella Association also provides resources and support at cdbra.ca.
Genetic Syndromes and Developmental Disorders
- Achondroplasia:
- Johns Hopkins provides insights and information about achondroplasia at their Greenberg Center.
- Alport Syndrome:
- Boystown Hospital offers information tailored for parents about Alport Syndrome on their website.
- Autism:
- Boystown Hospital has resources for parents dealing with autism on their autism info page.
- CHARGE Syndrome:
- For those impacted by CHARGE Syndrome, visit the CHARGE Syndrome Foundation and the support page at the University of Kansas Medical Center at kumc.edu.
- Down Syndrome:
- The Texas School for the Blind and Visually Impaired shares valuable resources on hearing impairments associated with Down syndrome at tsbvi.edu.
- Additionally, the Down Syndrome Information Network offers educational content at down-syndrome.net.
- Ectodermal Dysplasia:
- The National Foundation for Ectodermal Dysplasia provides extensive information, especially concerning hearing issues associated with this condition, at nfed.org.
- Trisomy 18 (18q Syndrome):
- For information and support, the Trisomy Support Organization offers resources at trisomy.org.
- Noonan Syndrome:
- The Noonan Syndrome Support Group provides information and resources at noonansyndrome.org.
This collection of resources offers essential information and support for individuals and families dealing with these conditions. For the latest updates, visit the specific resource pages listed above, where new research and community information are regularly shared.