Roselle is coming to Open Day


Because there is such a close link between albinism and nystagmus, the Nystagmus Network works closely with Albinism Fellowship UK. Chair of AFUK, Roselle Potts, will be joining us this year at Open Day to speak with researchers, to find out more about our education advocacy service and chat with families affected by ocular or oculocutaneous … Continue reading Roselle is coming to Open Day

Does albinism protect against AMD?


We are seeking potential research candidates on behalf of researchers in Southampton (Jay Self and Helena Lee) who must be over the age of 60 and have any form of albinism. Thank you to those who have already responded. We have already found 12 people, but we really need 20 for a viable study. If … Continue reading Does albinism protect against AMD?

Researchers study whether albinism could protect against AMD


PRESS RELEASE ISSUED BY UNIVERSITY HOSPITAL SOUTHAMPTON NHS FOUNDATION TRUST 23 August 2018 Researchers in Southampton are in the early stages of a pioneering study which aims to discover if albinism may protect against a leading cause of sight loss. Despite age-related macular degeneration (AMD) affecting a quarter of people over 65 and half of … Continue reading Researchers study whether albinism could protect against AMD

Albinism Awareness Day


We join our sister charity, Albinism Fellowship UK, today in celebrating Albinism Awareness Day, with a special guest blog post from AFUK Chair, Roselle Potts. Help us to raise positive awareness on our international campaign day June 13th is an important date for people with albinism everywhere. It’s International Albinism Awareness Day, when people with … Continue reading Albinism Awareness Day

Please vote for Ben


Ben Haynes is a talented young musician who just happens to have albinism and nystagmus. Ben has entered a music competition and needs your vote. We’ll let Ben explain … Hi everyone. I’m a self employed musician from Nottingham with Albinism and Nystagmus. I performed a few songs at the Nystagmus Network Open day in … Continue reading Please vote for Ben

Research participation opportunity – albinism in the over 60s


Albinism researchers in Southampton (Jay Self and Helena Lee) would love to hear from anyone with any form of albinism who is over the age of 60. If you or anyone you know fits the bill, please read on …     Jay and Helena are seeking to understand two questions which have baffled researchers … Continue reading Research participation opportunity – albinism in the over 60s