Search

Home_photos

Welcome to the website of the Vein of Galen Malformation Support Group

The Vein of Galen Malformation Support Group is a newly formed support group for families supporting a child with vein of Galen malformation.

On our website you will find :

  • Information about the condition, vein of Galen malformation on both our About Vein of Galen and Medical Presentation pages.
  • Details about our group, including our aims and history on our About Us pages. You may like to visit our Newsletter page to read our current newsletter. Complete a membership form to join us and receive our newsletters via e-mail as well as other information and support.
  • Stories written by families about their journey with a child with vein of Galen.
  • A Questions page with questions that are commonly asked by families with a child with this condition. Read the answers to these questions written by our medical professionals. Feel free to send us any other questions for answering by our medical professionals from this page.
  • An extensive list of Links and Resources of other groups and websites that can provide information and support about this condition.

Contact us

If you have any questions or comments about what we are doing well and what things you would like to see more of on our website. Please complete the feedback form or e-mail us.


 


 



Vein of Galen Malformation Support Group Disclaimer

Though much of our material has been checked by interventional neuroradioloigists and other health professionals, the Vein of Galen Malformation Support Group is not a medically qualified organisation. The information we supply is for general educational purposes only and should not be regarded as advice on the diagnosis or treatment of either vein of Galen malformaton or any other medical condition. Whilst every effort has been made to ensure the accuracy of the information provided, the Vein of Galen Malformation Support Group cannot be held responsible for such information. This information provided is designed to support, not replace, the relationship that exists between a patient and his/her doctor.

Recent updates

Latest newsletter

The August '09 newsletter is now available for downloading (pdf format).

Update on Fynn

Fynn's story has been updated for April 2009.

Update on Mason

Amee has written an update on Mason from 12 to 20 months. Read Mason's Journey.

New story link

New York surgeon gives Texas girl with a rare disorder a new lease on life

New story

We have added a new story of inspiration (taken from the Daily Mail).

Forum

We now have a forum where we can share our experiences and swap advice.

Update on Danny

Danny's mom, Danielle has written a short update on Danny's treatment. Read about it at the end of Danny's Story.

Online membership form

We now have an online membership form for you to use to sign up if you are not already a member.