Project goal :
Based on our previous european conferences in Oslo and Venice the conference will give the chance to build an even bigger network of scientists and to call attention to the promotion of research for this rare eye disease, which is often accompanied by other indispositions and even more uncommon syndroms. We are the orphans of medical science in germany and europe. Physicians and scientists from all over europe and the world will comment on the most important questions concerning the advancement of research and treatment, share and discuss their knowledge as well as debate the options of prevention and treatment of Aniridia and care plus accomodation of patients. Due to the combined syndroms and corollary diseases with Aniridia those will be a comprehensive part of the discussion on-site.
We sincerely welcome german ophthalmologists, opticians and optometrists and invite them hereby to join our conference and become a part of and strengthen our network of patients, relatives and physicians. We already achieved some very important milestones, which help our patients to avoid exacerbation over the course of their lives. Nonetheless it's necessary to gather our ressources furthermore, especially promoting research further. This prospect offers the chance and hope to influence the course of the disease in the future. Since the Aniridia syndrom is so uncommon (around 800 patients in germany with an unknown high estimated number of unreported cases) research is not or at least not sufficiently enough promoted by the pharmaceutical industry or government-funded research insitutions. Therefore for years we as patients lobby for more funds going into research. Since our club member Martin Dausch, professional football player in the german 2. Bundesliga and currently under contract at the MSV Duisburg, took the step of going public things for us already changed a lot. In the year of 2013, when Martin was still a player of 1. FC Union Berlin, a huge wave of support by "Unionern" (name of the supporters of the 1. FC Union Berlin) started, when he made the public aware of the disease affecting his newly born son Luca. A countless number of helping hands came to our aid back then (and is going on till today), which is still up to this day unbelievable to us. Due to the financial support from this campaign we were able to fund and aid the Aniridia research center in Homburg a. d. Saar. But since those funds are explicitly reserved for funding research, we need your support for the "Highlight" of our Aniridia community in the next summer!
Please support the possibility of our european conference with a small donation or contact us with any idea you might have, which will help to bring our campaign into the public domain and therefore support the funding of our conference.
Countless children's eyes will spark with joy and maybe SEE better again !!!
Together against a rare eye disease!
- Promotion of research for this rare eye disease (which is often accompanied by other indispositions/even more uncommon syndroms)
- better treatment
- better counseling of patients, especially by physicians, who are often not well informed about the disease and the specific treatment of it
- enhance and strengthen our networks
- getting young, interested physicians involved and informed at the conference
- target groups are also obviously our patients and their relatives as well as any interested person
Cause helping ist the most beautiful verb in the world after loving!
All funds received will be part of the financing of this conference!