International Resources - Diagnosis Specific Groups
- International Aicardi-Goutières Syndrome Association
The purpose of the association is to spread knowledge of Aicardi-Goutières syndrome, to provide sufferers from this disease and their families with support through contacts with doctors and health organisations internationally; its purpose is also to promote and support research in the area of problems specifically linked with Aicardi-Goutières syndrome.
Alström Syndrome International
- Alström Syndrome International
The information provided on this site is designed to support, not replace, the relationship that exists between a patient/site visitor and his/her existing physician.
- Lighthouse International
A leading non-profit organization dedicated to preserving vision and to providing critically needed vision and rehabilitation services to help people of all ages overcome the challenges of vision loss.
- International Council for Education of People with Visual Impairment
A global association of individuals and organizations that promotes equal access to appropriate education for all children and youth with visual impairment so that they may achieve their full potential.
- Sightsavers International
An international charity which works with partners to eliminate avoidable blindness and promote equality of opportunity for disabled people in the developing world
- CFC International (Cardio-Facio-Cutaneous Syndrome)
A support group for families and others whose lives are touched by this very rare syndrome.
- International 22q11.2. Deletion Syndrome Foundation, Inc.
Aims to bring awareness and support for this rare and under recognized condition. The organization is built on the belief that through identification, appropriate treatment, research and education there can be a better quality of life for those living with this condition and their families, improved medical care for patients with this condition and one day a cure for the 22q11.2 deletion.
- Churg-Strauss Syndrome International Support Group
Aims to provide information, encouragement and fellowship to Churg-Strauss Syndrome patients, care-givers, friends, physicians and relatives and to stimulate debate about the condition ensuring it receives wider recognition.
- International Costello Syndrome Support Group
Parent support group that shares information about Costello Syndrome (CS) with parents and health providers around the world. Aim is to gain a to better understanding of Costello Syndrome identify the best practices in treatment for children with CS.
Deaf / Hard of Hearing
- Deaf Child Worldwide
Our vision is a world without barriers for every deaf child. Our work is to empower deaf children and young people to achieve their true potential andto help families to achieve the best outcomes for their deaf child.
- Global Deaf Connection
An international Deaf education, non-governmental organization that is increasing social, economic and educational opportunities for Deaf people in the world's poorest nations.
- International Continence Society (ICS)
Mission to study storage and voiding function of the lower urinary tract, its diagnosis and the management of lower urinary tract dysfunction, and to encourage research into pathophysiology, diagnostic techniques and treatment.
Prader Willi Syndrome
- Retina International
A voluntary charitable umbrella association of 33 national societies each of which is created and run by people with Retinitis Pigmentosa (RP), Usher Syndrome, Macular Degeneration and allied retinal dystrophies, their families and friends.
- International Federation for Spina Bifida and Hydrocephalus (IF)
world-wide umbrella organisation for Spina Bifida and Hydrocephalus organisations with an aim to disseminate information and expertise throughout the world to families, individuals, professionals and volunteers involved in the Hydrocephalus and Spina Bifida field.
- International WAGR Syndrome Association
Mission to promote international knowledge and awareness of WAGR syndrome and its complications and treatments, to stimulate research and to reach out to those affected by WAGR syndrome in an effort to improve their lives
- International Registry of Werner Syndrome
The International Registry of Werner Syndrome provides a central repository for data and materials in order to advance the progress of research and education relevant to this disorder.