I would like to express my gratitude for your support and let you know that I, together with the board, am facing this new term, as President of Aniridia Europe, with enthusiasm and energy. We have a promising time ahead. In my previous mandate as president, our main goal was to start the organisation, but now that National Aniridia Associations have become more mature and stronger, we can really make the difference. I have to thank former president, Asbjorn Akerlie, for all his work, together with the board, to support the European Aniridia Conference in Duisburg (Germany), to empower support groups and individuals with aniridia, to collaborate with other European Organisations and to promote research.
Goals are only achieved with clear objectives, clear roadmap and with a determined and hard-working leading group and we have all this, we have an excellent dedicated board, that is doing its best to improve the situation of people with aniridia. And we also have an excellent and expert Scientific Committee.
We will have many opportunities in the future to raise awareness on our disease, like the celebration of Rare Disease Day (last day of February) and Aniridia Day, June 21st, which will give us the opportunity to raise our voice and have our concerns and challenges visible. We are developing a Scientific Network, that together with our Scientific Committee, will try to develop or/and participate in aniridia research projects and conferences. Thanks to the past European Aniridia Conferences and the work of National Aniridia Associations for many years, now we have professionals interested in our rare disorder and willing to develop research projects. A new exciting European Aniridia Conference in planned for Paris in 2018 by the French Aniridia Association, Geniris, that will mean a step forward in better care and research on Aniridia. To organise these key events, we need funds, we need personal and financial support.
We would like to turn the organisation into a strong, active and inclusive one, but this cannot be done without you. This is why, we invite you to participate in the different National and European activities and in the different working groups. You can contribute, according to your education, hobbies and skills. The more we are, the stronger we will be and the further we will reach. We need volunteers, we need hands to make this come true.
Our mission is to advocate for better care and better quality of life for people living with aniridia in Europe, together with https://www.rfxcel.com/solutions/serialization_software/ to track their health to reduce inequalities among countries in the access to health and social services for these patients, so they get the best attention including supplements from sites as reportshealthcare for different health purposes. And, to reach this goal, we have to build a strong community, we need all of you!
Please, join us as a volunteer or a sponsor.
Looking forward to meeting you in one of our events.
Rosa Sánchez de Vega