Do you have aniridia? Or someone in your family (eg son or daughter)?
Want to meet others with aniridia and relatives, to exchange information and experiences with them?
Discover what you can achieve or accomplish despite aniridia?
Do you want (more) information on tools, on which services to call, how to cope with aniridia, etc?
Let us know!
We, Joeri and Didier (both also aniridia patients), took the initiative to initially bring as many as possible aniridia patients and their relatives in Belgium together.
Because the diversity and rarity (1/100.000 average) of the disease and its secondary conditions, people usually have insufficient knowledge of what aniridia implies in practice, let alone one has ever heard about it (even some general practitioners).
To gradually change this, at least the following things would have to happen:
- Ensure the recognition as a distinct disorder with specific needs and implications (not only under a vague general term “eye condition” since it means much more and is very specific);
- Creating awareness / consciousness in society: what is niridia and what comes along with it (at least by doctors);
- In terms of social services and support to schools and employment to a more targeted approach custom tailored in function of the very specific implications and needs due to aniridia;
- A kind of guide for anyone who ever faced Aniridia is (related information, genetic background , possible implications, fast diagnoses at birth, and where to go for specialized and periodic medical follow-up, social support and according guidance to find this support; most appropriate low vision centers in the neighbourhood, support groups and associations, etc.);
- Encourage physicians and scientists to research new findings and treatments for Aniridia and its related conditions and implications.
In order to realize this, joining forces is essential either in the form of a forum or in the form of an effective association (such as is already the case in some other European countries) or a combination of both (eg, one follows after the other). This would also be the right platform for supporting Aniridia patients and anyone who comes in contact with them (eg parents) and for exchanging experiences and / or information. As a group, there would be more possibilities to defend the interests of people with aniridia and participate in the Aniridia Europe federation.
Here is the link to the website of the Aniridia Europe federation (a European umbrella organization to oversee national associations) http://www.aniridia.eu/. On this website you can already find a lot of useful information! Our own Belgian website is under construction: keep an eye on http://www.aniridie.be/.
The final principle is briefly said to be at the service of everyone with aniridia. Let us know what you think are important goals / needs. And to what extent you want to help breaking new ground to achieve these goals.
Soon, somewhere in the (early) spring, we hope to have a first meeting. Hopefully we can welcome you all over there! At this moment we ask you only one thing: let us know if you are interested in such aniridia group or not. You can reach us at (telephone preferably outside office hours):
- Email: firstname.lastname@example.org
- Didier: 0475/92.57.32 or
- Joeri: 0486/83.01.13
You don’t like the whole idea? Also fine. In that case, we would appreciate if you could let us know, so that at least we know that we reached sufficient people to make our plan known. We respect your privacy and therefore this is a friendly question and no obligation.
Hope to see you soon .