Making the RARE voice heard
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. Albinism means partial to severe visual impairment for those living with it.
The United Nations has officially recognised International Albinism 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 respects, 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, both socially and medically. And these problems do exist in the UK and 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). Nystagmus is a common factor among people with albinism, too.
People from all ethnic groups can be affected by albinism, and the Albinism Fellowship supports all of these groups with our services.
#TuesdayTakeover with Rare Revolution
This year, the Albinism Fellowship has a message of support for our charity’s members throughout the UK and Ireland. We’re using the social media and communications channels of charities and media outlets such as Rare Revolution magazine www.rarerevolutionmagazine.com to get our message across this year, and we are grateful for their support. On Tuesday 12 June, we will be posting from Rare Revolution’s social feeds on #takeovertuesday, please look out for our Tweets and Facebook updates. Follow us on 12 June on Twitter @RareRevolutionMagazine and via @RareRevolutionM as well as on Facebook.
We look forward to engaging with all the whole Rare Revolution Community.
New for 2018 "Understanding Albinism Brochure
At the Albinism Fellowship, we would 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 our ‘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 an invitation to take part in a range of useful and enjoyable events, including our regional gatherings and our national conference in 2019.
Thames Valley Get-Together
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.
We have a range of opportunities this summer for new and existing members to do just that, including the Thames Valley Get-Together in Taplow, Bucks – which will be held on 23 June, just days after International Albinism Awareness Day. We’d love to see you there.
Finally on my 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
About International Albinism Awareness Day
The global awareness day International Albinism Awareness Day was launched by the United Nations in 2015. It was adopted June 13th as the official International Awareness Day following a resolution adopted by the United Nations General Assembly in 2014.
According to the United Nations, albinism remains a condition that is profoundly misunderstood, socially and medically.
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).
The Albinism Fellowship offers information about albinism as condition on its website via this link, including FAQs, PDFs and Word documents which can be downloaded. The charity’s new Understanding Albinism brochure provides a more in-depth resource.
· For more information, please contact Andrew Bennett, PR Coordinator for the Albinism Fellowship, on 07796 178346.
Rare Revolution Editor