The Albinism Fellowship (UK and Ireland) held their first ever miniconference on Saturday 29 September 2012, in the Fairways Hotel, Dundalk, County Louth.
This event was for people with albinism, family, friends and interested professionals.
Albinism is a genetically inherited group of conditions which results in a reduction or, complete lack, of pigment (colour) in the skin, hair and eyes. This can result in pale skin which burns easily in the sun, virtually white hair, very severe short sight and photophobia, (a severe sensitivity to light).
There are two types of albinism, that which affects the skin, hair and eyes (oculo cutaneous albinism) and that which affects just the eyes (ocular albinism).
The most common type is oculo-cutaneous albinism. There are a number of distinct types of albinism which are associated with different genes. For further information Visit the Albinism Fellowship's website.
This event was funded jointly by the Sensory Engagement Programme (SEP), the Royal National Institute of Blind People (RNIB NI) and the Community Foundation for Ireland.
The conference included an information and discussion based programme, along side a crèche and exhibition area.
Mark Sanderson, Chair of the Albinism Fellowship (UK & Ireland) said, "In recognition of our growing membership across Ireland, North and South and an increasing awareness and interest in albinism generally, we are delighted to be able to increase our activity through this conference."
Rosaleen Dempsey, Albinism Fellowship Trustee and Contact Person for Northern Ireland said, "This was an exciting opportunity to raise the profile of albinism in both Northern Ireland and the Republic of Ireland and to let people living here, learn more about the support and services available to them."
Included in the conference programme;
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'Albinism and its effect on vision', a talk by Sarah Chamney, Registrar in the Ophthalmology Department of the Royal Victoria Hospital, Belfast.
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A parent and preschool panel discussion with parents of children with albinism or, parents with albinism.
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Joan Curran, an Educational Psychologist working in the Republic of Ireland, gave a talk on educational assessment for children with low vision associated with albinism. Her talk included useful tips for parents of children at both primary and secondary school.
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The conference concluded with a discussion entitled 'Living with Albinism', with panelists with albinism, involved in the fields of paralympic sport, music, and higher education or campaigning.
The exhibition area hosted services for both Northern Ireland and the Republic of Ireland. Among these were RNIB NI, The National Council for the Blind of Ireland (NCBI), specialist schools for children with sight loss, parent support organisations and assistive technology companies.
Sandra Watts, a parent of a child with albinism said, "Thank you for all your hard work at the weekend. We thoroughly enjoyed the day and were very glad we made the trip. My son made a new friend from Northern Ireland. He is also 10 years old and they got on great and made all sorts of plans for keeping in touch".
While one of the main aims of the conference was to provide information to parents and families, children and adults with albinism, the most important element of the event was to promote peer support.
This was reflected in feedback received from the conference.
Sincere thanks go to all our funders, our staff and volunteers, the exhibitors, the speakers, the media who publicised the conference and of course all the attendees for making the day so enjoyable.
For more information contact:
Rosaleen Dempsey
(Albinism Fellowship Trustee and Contact Person for Northern Ireland)
Tel: 028 9032 9373
Email: rosaleen.dempsey@rnib.org.uk