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Welcome to the UK FOCUS Homepage
These pages are dedicated to the loving memory of Joy LeBaron, Jesse Steven Reilly Hanham, Dillon Rollins, Jessica Kennedy, Jacob, Gavin, Alison and Roxi never to be forgotten.
For Parents, Carers, Families and professionals of children with Septo Optic Dysplasia or Optic Nerve Hypoplasia UK Division of FOCUS (For our Children's Unique Sight) Affiliated to Contact A Family.
Who We Are & What We Do
SOD/ONH Support Network has been started by a small number of families who have children with the condition Septo Optic Dysplasia or Optic Nerve Hypoplasia.
We aim to:
- Provide a point of contact to any person within the UK who wishes to know more about the syndrome septo optic dysplasia or optic nerve hypoplasia.
- Provide information about this syndrome to parents, families, carers and professionals.
- Link families who have children with septo optic dysplasia or optic nerve hypoplasia, by location, age or similarity of syndrome characteristics.
- Organise an annual conference, to enable families who have children with septo optic dysplasia or optic nerve hypoplasia to meet, and to have access to speakers who are specialists in this condition.
- Work with professionals
involved in septo optic dysplasia and optic nerve hypoplasia, in order
to compile a set of guidelines to ensure correct medical intervention
at all times throughout the children's lives.
Statement from FOCUS UK
As some of you may be aware, Jordan (model) has recently given birth to her first child. He has just been diagnosed with ONH and is awaiting the further tests that we all know so well.
Read the entire statement here
We
are fortunate to be able to share the slides shown at the Conference by
Dr. Mehul Dattani, Clinical Senior Lecturer/Honorary Consultant in Paediatric
Endocrinology, The Institute of Child Health at Great Ormond Street Hospital.
You can view Dr. Mehul Dattani presentation as a web
page, or
as a Power Point
.
ONH
Booklet
Now
you can download and print the entire booklet without having to go page
by page!
(You may have to down load Adobe Acrobat if you do not
have it already installed on you computer. You may do this by clicking
the image.)
For more information please contact:
Alison Baker
E-mail: Alison@focusfamilies.org
Annie Bloomfield
E-mail: abloomfield@talk21.com
Malcolm Painter
E-mail: mscs@thehillview.freeserve.co.uk
