STICHTING USHERSYNDROOM (USHER SYNDROME FOUNDATION)
Stichting Ushersyndroom is a network organisation of and by people suffering from Usher Syndrome, supported by their social environment. The main objective of the foundation is to raise funds for promoting scientific research.
USHER4USHER CONTACT GROUP
Contact with fellow sufferers can be highly valuable. Through contact with others you can exchange information and experiences.
Read more about contact group Usher4usher
NATIONAL USHER SYNDROME EXPERT CENTRE
The Ministry of Health has declared Radboudumc in Nijmegen, the Netherlands, the National Usher Syndrome Expert Centre.
A special Usher desk has been set up for people suffering from Usher Syndrome.
(INTER)NATIONAL USHER ORGANISATIONS
Cooperation with other patient organisations and fund-raising foundations are really important. Not only to stimulate common scientific research, but also to get a picture of all patients worldwide.
FACEBOOK GROUPS IN THE NETHERLANDS
There are several Facebook groups in which people suffering from Usher Syndrome and/or parents are active. In these groups they exchange experiences and ask each other questions. In order to become a member of one of these groups, you have to be on Facebook.
In the Netherlands, a number of ophthalmologists is specialised in the eye disease Retinitis Pigmentosa.
- Prof. dr. C.B. Hoyng in Radboudumc Nijmegen
- Dr. L. I. van den Born in het Oogziekenhuis in Rotterdam
- Prof. dr. C.J.F. Boon in LUMC Leiden en AMC Amsterdam
There are many websites of Ushers, parents and groups of people who write personal experience stories from the perspective of patients and organise activities for people suffering from Usher Syndrome.
CALL WITH ‘OOGLIJN’
Do you have any questions about (living with) an eye disorder or for support under the Social Support Act?
- Telephone: +3130-2945444 (Monday-Friday 09.00 – 15.30 hours)
There are various organisations for social services, support in education, coaching at work and rehabilitation in the Netherlands.
Sharing of knowledge and information is essential. Within a network, people suffering from Usher Syndrome, parents and family, ophthalmologists and ear specialists, scientists, health care professionals, pharmacists and health insurance companies can support each other, share knowledge and unravel Usher Syndrome.