We have found and firmly believe that the best and most reliable information comes from the interventional neuroradiologists and other medical professionals that are on your child’s team. We found it a good idea to write down questions as we thought of them so that we always had a list of questions to ask when we took our son for appointments etc.

We have found it very difficult to find information about vein of Galen malformation. What we have found is mostly definitions and case studies and some of which is not current. It is important to remember that different countries have different medical practises and some practises change, date and evolve with technology and time.

The links below are what we have been able to find so far. We hope that they are of some help to you.

Please contact us at vgm.info@nzord.org.nz if you know of any other useful links to information about this condition. We would be happy to include these links in our list below.

www.veinofgalen.co.uk
This is the only site that we have found that is solely dedicated to this condition. The site provides information about the condition and its treatment. The site also has family stories from all over the world and a forum to offer support to parents. There is also a questions page with answers from a neuroradiologist.

Although some of the information on this site is out of date it is a good starting point and seems to be the only site dedicated to vein of Galen.

UCSF Children's Hospital
These pages contain information about the signs and symptoms, diagnosis and treatment of vein of Galen malformations.

The Toronto Brain Vascular Malformation Study Group
These pages contain information about the signs and symptoms, diagnosis and treatment of vein of Galen malformations and some MRI images of what the condition looks like.

Children's Hospital Boston
This page contains a summary of condition and describes possible treatment.

Hyman-Newman Institute for Neurology and Neurosurgery
This page contains a summary of condition and describes possible treatment.

Contact a Family
A U.K website that has information about many conditions including vein of Galen malformation.

Journal of Postgraduate Medicine
This site contains a wide range of articles, case studies, images etc on many different conditions. You will need to type “vein of Galen malformation” into the search box to find a list of related information.

Facebook
In the “groups section” there is a vein of Galen malformation group that you can join if you are a facebook member. The group has a forum and you can connect with other families’ world wide that have children with vein of Galen malformation.

Other Sources of Information

Please contact us at vgm.info@nzord.org.nz if you know of any other useful sources of information about this condition. We would be happy to include sources in our list below. If you have hard copies of information that you would be happy to share with the group we could distribute that to families for you or publish it on this page.

Parent to Parent New Zealand

Parent to Parent is a support and information network for parents of children with special needs. Support is provided voluntarily by trained support parents who have a child with the same or similar needs. Their services are free to families

If you are interested in more information, simply visit the website, call your local Parent-to-Parent group, or the National Office. Alternatively, you can contact them via email.

PO Box 234
WAIKATO MAIL CENTRE
Phone/Fax 07 853 8491
Toll Free 0508 236 236
www.parent2parent.org.nz

We found this service helpful in terms of finding information about vein of Galen malformation although they were unable to match us with another family with vein of Galen malformation as the condition is so rare they matched us with a family living with a child with a heart condition. Although the condition wasn’t the same we found the support useful as we could as for support with raising a “sick” child and coping with hospital visits and operations.

Family Information Service

The Family Information Service provides families in New Zealand with information about children’s medical conditions and disabilities and with support group details. The focus is on consumer health information which complements that provided by health professionals. You can get information by, visiting them in person on Level 3 of Starship Children’s Hospital, writing a letter or fax, making a phone call, sending an e-mail or sending a request via their website.

This service is fantastic. The Service has access to medical websites that the general public doesn’t have access to, so we were able to find information that we couldn't otherwise do on our own and the information was very helpful to us.

Level 3 (opposite Outpatients)
Starship Children’s Health
Private Bag 92024
Auckland

Phone: (09) 307 4955
Fax: (09) 307 4979
Email: ssfis@adhb.govt.nz
Website: www.starship.org.nz