The impact of glare on reading


Researchers are investigating the impact of glare on young children with albinism and nystagmus to help ease important day-to-day tasks like reading. Jointly funded by Nystagmus Network and Fight for Sight, a team of researchers at the University of Leicester will be investigating glare in patients with infantile nystagmus.   People with nystagmus often experience glare, … Continue reading The impact of glare on reading

International Albinism Awareness Day, 13 June


We are delighted to mark international Albinism Awareness Day with our friends living with albinism both here and across the world and especially with Albinism Fellowship UK. Find out more about the 2022 theme – United in making our voice heard on the United Nations website.

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 (OA, or OCA). Thank you to those who have already responded. We have already found 12 people, but we really need 20 for a … Continue reading Does albinism protect against AMD?

Albinism Awareness Day


Zoom celebration for International Albinism Awareness Day on 13 June 2021 Guest post from Roselle Potts, Chair of the Albinism Fellowship To mark International Albinism Awareness Day* on 13 June the Albinism Fellowship is running a mini conference on Zoom. The event will kick off at 2pm and after a brief introduction session there will … Continue reading Albinism Awareness Day

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