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.

EDA - European Days of Albinism

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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.

The main goal of this meeting is to give the opportunity to young members of our associations to meet other young people with albinism from different European countries, share with them experiences and propose future joint projects. 

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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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.

 

 

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Benoît ARVEILER

Co-Chair

CHU de Bordeaux
Bordeaux, France

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Lluis MONTOLIU

Co-Chair

CNB-CSIC and CIBERER-ISCIII
Madrid, Spain

BrianBrooks biography
Brian BROOKS

National Eye Institute, NIH

Bethesda, MD, USA

MariaVanGenderen biography
Maria Mies VAN GENDEREN

Bartimeus, Diagnostic Centre for Rare Visual Disorders

Zeist, The Netherlands

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Irene GOTTLOB

University of Leicester

Leicester, UK

KarenGronskov biography
Karen GRONSKOV

Kennedy Center, Clinical Genetics

Copenhagen, Denmark

MichaelHoffmann biography
Michael HOFFMANN

University Eye Clinic

Magdeburg, Germany

BarbaraKaesmannKellner biography
Barbara KÄSMANN-KELLNER

University Eye Clinic

Homburg, Germany

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Alessandra DEL LONGO

Niguarda Hospital

Milan, Italy

MichaelMarks biography
Michael MARKS

Philadelphia Children Hospital and UPENN

Philadelphia, PA, USA

FannyMoricePicard biography
Fanny MORICE-PICARD

CHU de Bordeaux

Bordeaux, France

MariaVittoriaSchiaffino biography
Maria Vittoria SCHIAFFINO

San Raffaele Hospital

Milan, Italy

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Maria Jose TRUJILLO

FJD Hospital

Madrid, Spain

Albinism is our common.

Albinism Europe is a network of European Albinism organizations of people with albinism.

Today, nine national organisations are part of this initiative:

DENMARK – Dansk Forening For Albinisme

FINLAND – Suomen Albinismiyhdistys ry

FRANCE – Genespoir

GERMANY – NOAH Albinismus Selbsthilfegruppe e.V

ITALY – Albinit

NORWAY – Norsk Forening For Albinisme

SPAIN – ALBA

TURKEY – Albinizm Dernegi

UK & IRELAND – The Albinism Fellowship

 

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On 7 and 8 April 2016 will be held in Milan (Italy) the 3rd European Days of albinism (3EDA). After the events held in Paris (October 2012, organized by Genespoir) and Valencia (April 2014, organized by ALBA), on this occasion are held in Italy, is the Italian association ALBINIT and the hospital Niguarda Ca'Granda Milan, Who hosts this important event in the world of albinism.

As in the previous successful editions of EDA in Paris and Valencia, the 3EDA will bring together international experts on albinism, with patients, families and their associations, at the same conference.