Focus Families, Septo-optic dysplasia, Optic nerve hypoplasia



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United States | United Kingdom | Germany
 


Enter FOCUS Families site by double clicking the area in which you live on the world map or country link.

Optic Nerve Hypoplasia, the under development of one or both Optic Nerves, was once considered rare but is now the leading cause of pediatric congenital vision loss in The United States of America. Septo Optic Dysplasia (formerly known as DeMorsier's Syndrome) has been described as an individual having Optic Nerve Hypoplasia, Endocrine dysfunction (for example: Growth Hormone Deficiency) and/or absence of the Septum Pellucidum.

 
     
  2004 Conference Information!
The 2004 FOCUS Families ONH/SOD Conference is heading to Kansas City, Missouri June 24th - 27th.
Click here for 2004 Conference Information!		  
     

 

FOCUS Families provides "Information, Education and Support" ™ to those affected by Optic Nerve Hypoplasia (ONH) & Septo Optic Dysplasia (SOD) world wide. FOCUS Families has divisions in Germany, The United Kingdom and The United States of America. The information on each division's link is the same; however each has specific information about regional FOCUS Families events and gatherings. Look for future world links to include: Italy, Australia and Canada!

FOCUS Families was borne from several families and their shared necessity: how, as parents, do we better understand our child's diagnosis? Today, FOCUS Families is able to offer its support to you by:

  • Funding research
  • Maintaining an informational web site -that is the only one of its kind
    *     Hosting an on-line email support group, with more than 400 registered members
    * Moderated online chats
  • Having divisions in The United States, the United Kingdom & Germany
  • Publishing a quarterly newsletter
  • Offering a toll free parent support line (US)
  • Parent networking
  • Physician referral
  • Having a medical advisory board (US)
  • Having Parent Advisors & Chapter Representatives (US)
  • Hosting Annual Conferences (US & UK)

Together, with you - the parent, the grandparent, the aunt/uncle, the caregiver, the individual, the teacher, the physician- we continue to gain knowledge about ONH/SOD how it affects each individual.

  
 



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This website has been designed to help empower parents of children with ONH/SOD. All the information herein is subject to opinion. If you suspect your child may have ONH/SOD it is recommended that you seek professional advice from a certified pediatric ophthalmologist. No one individual or company connected with this website assumes any liability or responsibility
for it's contents.

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