Resources

 

There is a lot of information about nystagmus and albinism online. Here are the sites we’ve found most useful.

What is nystagmus?
Definitions by Nystagmus Network,  Royal National Institute for the Blind,  Scottish Sensory Centre

Nystagmus websites
UK Nystagmus Network website contains a wealth of information about Nystagmus including published and current research projects, frequently asked questions, and links to other useful websites.
American Nystagmus Network website – similar to our UK Network, but with a focus on the USA.  
John Sanders research – contains several articles about nystagmus including  “How Common is Nystagmus”, “The Research Story so Far” , “Nystagmus and Driving” and “Nystagmus Treatments and Cures”.

What is albinism?
Definition by Noah (National Organization for Albinism and Hypopigmentation)

Albinsim websites
Noah – a US organisation offering support and advice to people with albinism, their families and professionals.
Albinism Fellowship – volunteer run organisation in the UK that provides information, advice and support for people with albinism and their families.

General vision websites
Looksupport for parents of visually impaired children in the UK.  They can put you in touch with other families and local organisations and they produce a quarterly newsletter.
Useful Vision – a charity which helps blind and visually impaired children and families in the North East of England.  They have regular events and outings including monthly Bounce group meetings for parents with babies and young children.

Facebook pages/groups
UK Nystagmus NetworkUSA Nystagmus Network, Nystagmus United, Wobbly Days for Nystagmus Families
OA/OCA Mommas, Noah, Albinism Matters, Albinism Friends

Blogs
Nystagmus Blog – a parents perspective of nystagmus by Ashley and Jen Bacon
Through the Eyes of Liam – a blog about Liam’s nystagmus/albinism by mom Amy
As Makayla Sees It – a blog about a twin who has nystagmus/albinism by mom Ashleigh
The Will To See – a regularly updated parenting blog about brothers Jack and Will who both have Ocular Albinism by mom Sarah.
The Shifty Eyes Blog – a young adult perspective of nystagmus by Jo
Nystagmus.co.uk – a teenager/young adult perspective of nystagmus by James
For more great blogs click “See more” on the OA/OCA Mommas Facebook group

Forums
Nystagmus Network ForumNystagmus Forum by James
Noah Albinism Online Community Forum

Publications
Nystagmus Network Shop – We highly recommend the Nystagmus Network Parents Pack (that you receive on signing up to the charity), the Early Onset Nystagmus book, and the Tales of Northwick book.  They represent great value for money and were delivered quickly.