ShowYourRareShowYourCare
#ShowYourRare
As a physician-researcher who care patients affected by a rare disease, such as aniridia, rare pathologies of iris and cornea, we must make it more visible, well known and better understood.
We must support associations and patients in France and Europe for better care, to prevent possible difficulties and promote researches.
We must show patience, weakness, strength and tenacity to overcome the obstacles that patients and associations faced in their life.
We must help and show that it is possible to be successful and happy living with a rare disease, such as aniridia, rare pathologies of iris and cornea.
As a physician-researcher and president of the Medical and Scientific Committee of a patient association in France with Geniris and a European federation with Aniridia Europe, we must advance care and research on aniridia, rare diseases of the iris and cornea. Geniris does it nationally in cooperation with French Rare Disease Alliance and AFM Téléthon, French rare diseases reference network and centers, Inserm and in Europe with Aniridia Europe, Eurordis, the european rare eye diseases network ERN EYE and more widely with the world ophtalmopediatric society, WSPOS.
We must show generosity, wisdom and courage.
We must raise awareness, educate, inform and advise patients, families and health professionals.
We must be proactive and lead the way in advancing care and research for aniridia, rare pathologies of iris and cornea.
Finally, we must build a national, European and international network between health professionals and patients that allows us, among other things, each year, to review recent advances in care and research. This will happen this year, 25th-26th August 2018 in Paris, France and it will be the 4th European Conference on Aniridia!
To find out more and register, go here : www.geniris.fr
#ShowYourCare
As a physician-researcher who care people affected by a rare disease such as aniridia, rare diseases of the iris and the cornea, we must be aware of the symptoms and how they change over time. We must ensure they have a good quality of care and quality of life.
We must also be considerate of others.
As a physician-researcher and president of the Medical and Scientific Committee of a patient association in France with Gêniris and a European federation with Aniridia Europe, we must inform and educate on the best treatments available, how to take care of their eyes, to manage risks and risky behaviors, to reduce the risk of blindness when these diseases are not yet curable.
We must develop preventative measures against further sight loss. We must develop national and international protocols outlining the best therapeutic treatments and standards of care. This is the main objective of Gêniris and Aniridia Europe in the short term.
One of the ways that can help achieve this is to take part in the 4th European Conference on Aniridia, anomalies of the iris and cornee development taking place on 25th-26th August in Paris, France.
A unique opportunity, in Europe, to meet specialists and families from across several continents!
To find out more and register, go here : www.geniris.fr