Today, June 13th is an important date for people with albinism everywhere. It’s International Albinism Awareness Day, when people with albinism celebrate together and raise the positive profile of this rare and widely misunderstood condition.
The United Nations has officially recognised International Awareness Day as a global event since 2015, following a resolution adopted by its General Assembly in 2014.
While we’re seeing progress in gaining a greater understanding of albinism in some areas, there is still much to do in tackling the many forms of discrimination and stigma that people with albinism face. I feel very strongly that this kind of discrimination should be stamped out.
Albinism is still, as the United Nations says, profoundly misunderstood, socially and medically. And these problems do exist, including in the Republic of Ireland, as much as elsewhere.
Albinism is a genetically inherited condition which is most noticeable because people with albinism have white – or very pale – hair due to the reduction of pigment in their hair, eyes and skin. It also means the person living with it suffers from partial to severe visual impairment and photophobia (a severe sensitivity to light).
People from all ethnic groups can be affected by albinism, and the Albinism Fellowship supports all of these groups with our services.
This year, the Albinism Fellowship has a message of support for our charity’s members throughout the Republic of Ireland. We’re using the social media and communications channels of charities such as NCBI who are involved in tackling site loss, and we are grateful for their support.
Our members in Ireland are very active and play an important role in the Albinism Fellowship. To celebrate International Albinism Awareness Day, one of our members will be running an Albinism Fundraising and Awareness day at Coolock, near Dublin, on Saturday, 9th June. We would love to see you there.
This is one of a range of social and educational opportunities we are providing for our members, people with albinism or professionals with an interest in albinism this summer, in Ireland and elsewhere. Do click on the link above to find out more.
We would also like remind our members of the range of services we can offer to help, and would encourage people with albinism who are not part of the Fellowship to join up.
New for 2018 is the ‘Understanding Albinism’ brochure, which is already proving a valuable source of information for people with albinism, parents, healthcare professionals, visual impairment professionals, school teachers and others.
This booklet is already being very well received. Existing members should already have received their copy by now. Any new members joining us will be posted a copy of Understanding Albinism as well as our members’ magazine, Albinism Life.
And there will be invitations to take part in a range of useful and enjoyable events, including our regional gatherings and our national conference in 2019.
Members tell us that, while our online resources are of great benefit, meeting other people with albinism and their families face-to-face at our events is often the most valuable resource.
Finally on this guest blog, a “shout out” to our fund-raisers who continue to do an immense amount to support our small charity, which is run entirely by volunteers. If you would like to get involved in fund-raising for the Albinism Fellowship – which helps us run essential events like the ones above – or sponsor us, please do get in touch.
Your support for the Albinism Fellowship is always very welcome, thank you so much.
Chair, the Albinism Fellowship