Matthew’s research on albinism


Matthew is a second year BA Geography student at Northumbria University, Newcastle. He also happens to have oculocutaneous albinism. He is passionate about increasing academic knowledge on the subject of albinism. His research is for a final year undergraduate dissertation project. Albinism, like many other disabilities, has the potential to have an impact on everyday … Continue reading Matthew’s research on albinism

Welcome boost for new mums and dads of young children with albinism


Guest post from Roselle Potts, Albinism Fellowship For more information, please contact Roselle Potts, email: chair@albinism.org.uk While the birth of a new baby is an occasion to celebrate, parents of children born with albinism often find that support for children with this rare genetic condition is hard to access. To mark International Albinism Awareness Day* … Continue reading Welcome boost for new mums and dads of young children with albinism

Your nystagmus research questions answered – question 7


We asked a group of Nystagmus Network supporters what questions they would most like to put to nystagmus researchers. Then we found researchers to answer them. Your questions were answered by Jay Self (JS), a Consultant Paediatric Ophthalmologist at University of Southampton and nystagmus researcher and Helena Lee (HL), a Consultant Ophthalmologist at University of … Continue reading Your nystagmus research questions answered – question 7

Your nystagmus research questions answered – question 6


We asked a group of Nystagmus Network supporters what questions they would most like to put to nystagmus researchers. Then we found researchers to answer them. Your questions were answered by Jay Self (JS), a Consultant Paediatric Ophthalmologist at University of Southampton and nystagmus researcher and Helena Lee (HL), a Consultant Ophthalmologist at University of … Continue reading Your nystagmus research questions answered – question 6

Your nystagmus research questions answered – question 5


We asked a group of Nystagmus Network supporters what questions they would most like to put to nystagmus researchers. Then we found researchers to answer them. Your questions were answered by Jay Self (JS), a Consultant Paediatric Ophthalmologist at University of Southampton and nystagmus researcher and Helena Lee (HL), a Consultant Ophthalmologist at University of … Continue reading Your nystagmus research questions answered – question 5

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