Uncategorised - Albinism Europe

Details: Uncategorised; 31 January 2020; Hits: 6531

5EDA

The fifth European Days of Albinism will be held in Bordeaux (France) from April 1 to 4, 2020. This event will gather together many international scientific experts on the different aspects related to albinism (Genetics, Ophthalmology, Dermatology, Biology, Neurology,...) in order to review the latest scientific advances and discuss future research orientations and collaborations.

EDA - European Days of Albinism

The European Days of Albinism (EDA) is a unique international event dedicated to albinism. It is organized every two years by Albinism Europe, the network of European patient associations of albinism. The first edition of this conference was held in Paris (France) in October 2012.

The EDA is firstly a scientific conference gathering international experts of albinism, researchers, clinicians and other medical professionals. It is made of several consecutive sessions dedicated to the various medical aspects of the disease: dermatology, ophthalmology, neurology, genetics, biology, epidemiology, therapies,…

In parallel, the EDA is the frame of a meeting of representatives of European patient associations. It is an opportunity for them to exchange experience, share best practices, discuss and develop joint initiatives.

Each edition of the EDA ends with a joint session for both scientists and associations. It is a time made for the two communities to share the main conclusions of their work as well as exchange on best ways to collaborate.

The main goals of this conference series are:

to strengthen the international community of albinism,
to improve medical care for people with albinism,
to promote and facilitate collaborative research projects on albinism,
to facilitate exchange of best practices between medical professionals as well as patient associations,
to enable the development and implementation of joint projects for the patients associations such as the creation of a European federation of albinism.

Since its second edition, the European Days of Albinism host the YPA, a meeting of young European people with albinism coming from the different European associations represented.

1st European Days of Albinism (1EDA) took place in Paris in 2012

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2nd European Days of Albinism (2EDA) took place in Valencia in 2014

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3rd European Day of Albinism (3EDA) took place in Milan in 2016

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YPA - meeting of Young People whith Albinism

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Meeting of Young People with Albinism (YPA) is a meeting of boys and girls with albinism from across Europe, to give them the opportunity to meet, exchange on their personal experiences and initiate joint projects. Meeting of Young People with Albinism (YPA) oftten take place on the same days of the EDA. but YPA has its own agenda, its own activities, etc.

YPA gives a better environment for them to get to know each other and socialize during the days that will last the meeting. At last, we suggest that the young people attending this meeting would no younger than 18 and no older than 30 years old.

We believe that it is very important to give to our young people the best education and environment for them to become the future elite capable of taking on the challenges faced by our European collaboration in an increasingly globalized and complex society.

1st meeting of Young People whith Albinism took place in Valencia in 2014

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2nd meeting of Young People whith Albinism took place in Milan in 2016

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Details: Uncategorised; 18 June 2017; Hits: 7416

Albinism is a rare genetic condition globally characterized by a number of specific deficits in the visual system, resulting in poor vision, in association with a variable hypopigmentation phenotype. This lack or reduction in pigment might affect the eyes, skin, and hair (oculocutaneous albinism, OCA), or only the eyes (ocular albinism, OA). In addition, there are several syndromic forms of albinism (e.g. Hermansky–Pudlak and Chediak–Higashi syndromes, HPS and CHS, respectively) in which the described hypopigmented and visual phenotypes coexist with more severe pathological alterations.

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The objectives of the Scientific Committee of Albinism Europe are:

to provide advice and recommendation on the direction of research
to foster communication between research groups and medical professionals
across Europe and the rest of the world
to be proactive by generating proposals for research projects
to be highly involved in the organisation of European conferences on Albinism.