Albinism Europe is a network of European associations of patients with albinism.
Our objectives are:
- to collaborate in spreading proper and correct information on albinism and the best available treatments
- to support and inspire research by creating scientific interest on albinism and associated illnesses and connecting professionals both at local and international level
- to promote the development of national and international guidelines on albinism
- to encourage people affected by albinism to create associations in other countries
Currently, nine associations are taking part in this initiative with in mind the goal to become an official federation in the coming months.
DENMARK
Dansk forening for albinisme (DFFA)
The Danish Association of Albinism was founded in 1996. Today, there are app. 130 members in the association spread throughout the country, and we even have a member resident in Sweden. In terms of age, we range from babies to grown-ups, but most of our members are families with children with albinism.
Our main focus is to create a possibility for knowledge sharing between members and to bring members knowledge about the disease itself and about how to cope with living with the disease. Our main event is the annual meeting; a weekend with presentations by professionals, room for knowledge sharing and events for the children. Throughout the year we have different activities where all members are free to attend.
On a national level we are a contact point for the public for anyone seeking information about albinism, in example with regards to professionals seeking more information on this specific diagnosis, book reviews or articles where the knowledge about living with albinism is essential. We are a member of Rare Diseases Denmark, a national alliance of 52 rare disease societies and Nedsat Syn, a network for organizations, professionals and others acting within the field of vision imparement.
On an international level we are participants in Albinism Europe where we participate in projects and European Days of Albinism.
If you want more information please refer to: www.albinisme.dk , www.nedsatsyn.dk or www.sjaeldnediagnoser.dk
FINLAND
Finnish Albinism Association
The Finnish Albinism Association was founded in December 2013 and it runs with volunteer work. At the moment we have about 70 members.
Albinism is very rare in Finland. For long time there had been wishes to get peer support and opportunity to get to know other people with albinism. For us it is especially important and empowering to meet other like us, and feel that we are not the only ones. Because of that the goal of the Finnish Albinism Association is to gather together people with albinism and their close ones, offer peer support and share knowledge about albinism.
Our association organizes every year one or two meetings for albinism families. Everyone who has ocular or oculocutaneous albinism is welcomed to join in.
We share knowledge through our website and through our active and low-threshold Facebook group
FRANCE
Genespoir - Association française des albinismes
Genespoir was created in Rennes (France) 1995 by a mother of three children, two of whom have oculocutaneous albinism. It is a French non-profit association with members in France, Belgium, Luxembourg and Switzerland.
Genespoir provides information to families with albinism, the general public and the medical world on albinism and its consequences: diagnosis of albinism, sun protection, optimal vision correction and protection, social issues, schooling and professional insertion. It provides support to people with albinism and their families, and informs them of their rights.
Genespoir holds every year an annual meeting which gives the opportunity to socialize, exchange experience and learn about medical and social issues through conferences of medical professionals.
For better operation and interaction with all the members, Genespoir has created local chapters in different regions of France as well as in Belgium.
In 2016, Genespoir had over 370 members: adults with albinism, parents and relatives of children with albinism, friends and sympathizers.
GERMANY
NOAH Albinismus Selbsthilfegruppe e.V.
We are the German association NOAH Albinismus Selbsthilfegruppe e.V. which was founded in 1993. We have around 340 members from Germany, Austria and Switzerland. There is also one member from Belgium and one coming from the Netherlands. NOAH collaborates with his medical advisors.
The association consists of 9 regional groups that represent different parts of Germany and two groups for Austria. We organise different meetings during the whole year like our annual meeting, meetings of the different regional groups, a meeting for grown-ups with albinism and a meeting for families called family leisure time. In addition we represent our association on different fares like the Sight City in Frankfurt.
We have set the following goals for our associations voluntary work:
• Information and education of PwA, parents, interested people, specialized staff and the wide public
• Improvement of therapeutic provision and rehabilitation
• Promotion of the integration of PwA (kindergarten, school, job, society)
• Promotion of exchange of experiences between members à frequent meetings and events
• Representation of social-political interests of PwA
• Cooperation with other associations or organisations with similar goals
You can find out more about NOAH on the website www.albinismus.de or on Facebook www.facebook.com/noah.albinismus.
ITALY
Albinit
Albinit is a National non-profit association created in 2008 to inform, represent and guarantee practical assistance to Italian people with albinism.
Since its creation Albinit has established excellent relationships with primary national scientific institutions, cooperating for the promotion of research projects, the creation of point of contacts for practical and psychological support and for the dissemination of proper scientific information.
Albinit is constantly committed to stimulate artistic and communication initiatives that can help improving the knowledge, image, reputation of people with albinism among the general public.
Support has also been granted to projects aimed to improve the situation of people with albinism in Africa, especially in Camerun.
In 2016 Albinit hosted in Milano the third edition of the European Days of Albinism (EDA) and the 2nd edition of the Young People with Albinism (YPA) project.
NETHERLANDS
Oogvereniging Albinisme
Oogvereniging Albinisme is a section of Oogvereniging (the Eye Association Netherlands), an association founded in 2013 after seven organisations active in the field of the blind and partially sighted people merged. Oogvereniging has 7000 members with a multitude of eye conditions. The main objectives of this non-profit association are eye care and social inclusion. The three main areas of concern are advocacy, providing information and stimulating contact between people with an eye condition. The Eye Association Netherlands contains regional groups, themed groups and patient groups. The albinism section, Oogvereniging Albinisme, is one of them. Enthusiastic volunteers keep all these groups running. Oogvereniging Albinisme is the continuation of the Dutch Albinism support group which was created in 1992. It is meant for people with albinism and their relatives and has about 80 members (2018). After quite a long period of radio silence the Albinism group was restarted in 2017 and is still in a build-up phase. It has a general website, Facebook page and Facebook group.
The key activities and (future) goals are:
- Providing a platform for people with albinism to meet and share experiences;
- Providing information and news about scientific research, how to cope with albinism, etc.;
- Organizing an annual meeting;
- Developing (inter)national collaboration with different parties
NORWAY
Norsk Forening For Albinisme
NFFA is an association for people with albinism and their family. NFFA counts about 210 members (2016).
The association is an important venue for the exchange of experience, knowledge and information. The member magazine Lysluggen is published about 4 times a year and is a central linkage.
Every year in the middle of March, annual meeting and membership gathering are held. This gathering is a popular event and the year's most important opportunity for socializing, learn about what's new in aids, get great tips and news that does a daily life with vision impairment, sensitive skin and light sensitive eyes easier and smarter.
SPAIN
ALBA- Asociación de ayuda a personas con albinismo
ALBA is a group of people related to albinism and among its main objectives are the tasks of guidance and help. ALBA is formed by people with albinism, parents or relatives of albinos and health professionals interested in this condition. ALBA was born within the ONCE (Territorial Delegation of Valencia), and among its members there are affiliates and not affiliated to this organization.
ALBA supports both people with albinism and their families; It informs and guides parents with the steps they must follow in dealing with this condition: medical specialists, requests for help, etc. It supports these parents in psychological and affective aspects, exchanging with them the experiences of the group and accompanying them when necessary.
ALBA treats albinism in a globalizing way that includes both the visual and dermatological aspects as well as its psychological affection, promoting a positive, natural and non-discriminatory attitude through lectures and talks.
ALBA sensitizes the different professionals (pediatricians, dermatologists, ophthalmologists ...) to the need of an early detection of albinism and the creation of protocols of action.
One way to achieve most of our goals as a group is to hold periodic meetings that allow us to know each other and exchange experiences.
If you share some of these concerns, if you are a person with albinism, you have a child or a family member with albinism, contact us. You will be very welcome.
TURKEY
Albinizm Dernegi
Albinism Association in Turkey is a medico-social organization founded in 2013. Our focus is to raise awareness about albinism in the country. Our board of members are based on volunteers who are supporting our association and our cause.
In social area, our aim to increase the quality of life of people with albinism (PwA) and their families as much as possible. To ensure that they have adequate knowledge of albinism, to build any social landscape for them to be able to share information.
In medico area, our aims are to follow up research efforts globally and collaborate with local scientists to be able to provide medical support locally as much as possible.
Albinizm Dostlari group in Facebook is our main social platform with 900+ members today. We have @albinizmdernegi (#albinizm_dernegi) at Instagram, Twitter and You Tube channels to reach to our community.
Some of important milestones we have achieved;
1. We have organized two Albinism Conferences in National level (2014, 2016).
2. We host local social meetings to be able to socialize with our community.
3. We had several TV, radio and newspaper media coverage to create awareness in the country.
4. We published the first in Turkish about Albinism – the book named “Raising a Child with Albinism” as an authorized publisher in Turkish assigned by NOAH (National Organization for Albinism and Hypopigmentation, US).
5. We have built a Scientific Committee holding some of the very important scientists and professor doctors in Turkey.
We will continue to work hard to provide all the support needed for our community.
UK & IRELAND
The Albinism Fellowship
Albinism Fellowship is a positive and sociable volunteer-run organisation that aims to provide information, advice and support for people with albinism and their families throughout the UK & Ireland. We also provide information about the condition to professionals working with people with albinism, and other appropriate interested parties.
AF holds regular regional events and national weekend conferences every two years. We also publish a magazine and offer telephone and online support.
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