United Nations praised for helping dispel albinism myths

But more efforts are needed to fight ignorance about albinism

(This is a press release I researched and wrote for the Albinism Fellowship charity for the UK and Republic of Ireland. This is gaining coverage in the media around the UK this week).

Work by the United Nations (UN) to de-bunk myths about albinism has been welcomed by the Albinism Fellowship. But the charity says more still needs to be done to explain the unique challenges that face people living with albinism every day.

With Albinism Awareness Day on 13 June this year, the Albinism Fellowship, which represents people living with the condition in the UK and the Republic of Ireland, has praised a United Nations Office of the High Commissioner for Human Rights (OHCHR) website which explains the reality of albinism.

The website, launched on 6 May, is entitled ‘Not ghosts but human beings’ and the OHCHR believe the rare genetic condition is ‘profoundly misunderstood, socially and medically’.

Albinism is a genetically inherited group of conditions which leads to a reduction, or complete lack of pigment (colour) in the skin, eyes and hair of people with the condition. Approximately 3,000 people in the UK and Republic of Ireland live with it.

Mark Sanderson, Chair of the Albinism Fellowship, said: ‘We welcome the significant work of the United Nations in raising the profile of albinism on the global stage.

Albinism Fellowship logo (from website) June 2015

‘We want to ensure that our voices are heard on Albinism Awareness Day. The problems facing people with albinism in the UK and Republic of Ireland are certainly less severe than in other parts of the world – for instance, in Tanzania, Africa, there have been media reports of people with albinism being targeted against their will to be used in witchcraft.

‘But nonetheless, those living with the condition here often face a daily battle to make others understand about their often poor sight and sensitivity to the sun, as well as facing general ignorance and prejudice about their distinctive appearances and why they “look different” to other people. This must stop.’

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Getting the media inspired by albinism

It can be difficult getting journalists interested in the work of a charity, especially with so many organisations clamouring for publicity – especially if that charity represents people with a rare genetic condition in the UK and the Republic of Ireland.

This month, my news release and media invite for the Albinism Fellowship Conference near Blackpool gained coverage in a number of local newspapers including the Lancashire Evening Post, and attracted interested from the broadcast media.

Here’s the news release (Inspired by Albinism conference FINAL invite), which was aimed at generating greater understanding of albinism – a condition which affects only 3,000 people in the UK and their families.

I will be back shortly on another topic – more tips on gaining coverage within editorial features.

 

Don’t be too quick to judge

As a break from my series of blogs about PR and related writing skills, here is a topical article I have just written for the Albinism Fellowship website.

The Albinism Fellowship is a charity I support with my Public Relations and communications skills, and a hot topic at the moment is the way that Hollywood films often depict people with albinism – there is huge room for improvement on this.

I will be back next month with advice on features and how to gain coverage within this type of article, especially for small and medium sized businesses.