Agenda Agenda
Organization Genespoir Organization Genespoir Scientific Research Scientific Research International Contacts International Contacts

International contacts

Genespoir’s financial means and human resources are limited. It is our view that our aims and objectives are best served by working together with all parties interested in our endeavours.

European organisations

Genespoir has contacts with the following European albinism organisations:

Italy 14 May 2011: meeting with the organisation Albinit
Denmark 23, 24 and 25 September 2011: meeting with the organisation Dansk Forening for Albinisme (DFFA)
Germany 5 November 2001: meeting with the organisation NOAH, Albinismus
Norway 16, 17 and 18 March 2012: meeting with the organisation Norsk Forening for Albinisme (NFFA)
Spain 24 and 25 March 2012: meeting with the organisation Alba
The UK and Ireland 16 June 2012: a Genespoir representative is to meet members of the organisation Albinism fellowship in the UK and Ireland in London

Contact is currently being cultivated with other albinism organisations throughout Europe.

We wish to create a European federation of organisations for people with albinism as soon as possible. This federation would favour exchanges between the different organisations and represent people with albinism throughout European by making their needs known (social and medical care, scientific research and the discovery and development of appropriate therapies).

World organisations

The objectives of the World Albinism Alliance are the following:

1. Educating People with Albinism: teaching People with Albinism how to properly care for their skin, maximize their vision, and navigate their surroundings with the greatest safety and efficiency, and to maintain normal psychosocial functioning; working with the parents of children with albinism to help them do the same.

2. Informing the General Public: developing materials and programmes that explain albinism in a clear and direct manner to educate people about the genetics of albinism and the impact on a person’s skin, hair and eyes, and other health and psychosocial implications.

3. Ensuring there is an accurate portrayal of albinism in the public media.

4. Advising Health Professionals: developing materials for doctors and other health professionals to enable them to properly diagnose albinism and give families accurate information and resources.

5. Educating the educators: developing materials for educators to facilitate the person with albinism to reach their greatest educational potential.

6. Human Rights: working to ensure that people with albinism are treated with equality and dignity, wherever they live.

7. Citizenship Rights: advocating for the idea that albinism, like any genetic condition should be considered a protected class like race, national origin, sex, religion; as set forth in the United Nations Universal Declaration of Human Rights.

8. Scientific Research: coordinating efforts to ensure that research opportunities to learn more about albinism and its management are fully explored internationally.

9. Facilitate local albinism organisations: to share knowledge and experience between albinism organisations throughout the world, and to assist with the establishment of new albinism organisations

European research

By developing closer links with other European organisations, Genespoir wishes to make its support to albinism research more effective.

In 2011, six laboratories gathered to present a European albinism research project within the framework of the European research plan for rare diseases E-rare2. The project coordinator was Prof. Lluis Montoliu from Madrid. In France, the laboratory that was involved was that of Prof. Arveiler and Prof. Taïeb in Bordeaux, in Italy that of Prof. Maria Vittoria Schiaffino, in Germany that of Dr Gottfried Brem and in Austria that of Dr Vet. med. Urban Besenfelder. This project concerned molecular research as well as vision and skin protection.

Unfortunately, this project could not get the funding it hoped for and therefore could not be set up.

A federation of European organisations would undoubtedly strengthen support for such European albinism research projects.

In order to establish a more coordinated and effective European initiative in support of our overall aims, Genespoir has organised the First European Days of Albinism which will take place in Paris on 27th and 28th October 2012.

Actualité Actualité