Hi. Is anyone still active on this group? I just learned that my son has Fraser's Syndrome and it is so hard to find any information. Hope to hear back from someone!!

Hi rkvv0720 My first child died in 1991 the same day he was born.I also lost another boy at 17 weeks into the pregnancy. Our family has been written up in a genetic document.What other questions would like to ask? I think they have only found a few of the genes, Professor Scambler from the UK maybe able to tell you more in this regard. kind regards Glenda

I come from Sydney Australia.

Hi all. Thank you for responding. My son at 18 months old was just diagnosed with Frasers syndrome. We are 32 weeks pregnant with our second child and learned that there is a chance he will have it as well. I can only find minimal information on the syndrome and was hoping to be able to get more.

Hi there I have a group on facebook called "Fraser syndrome/cryptopthalmos families" with a few different families who may be able to answer more questions for you. My daughter is 3 and has fraser syndrome. Our group is here for you. We are all facing similar challenges :)

Hi I am on Facebook under Glenda Song if you send me a message I will give you my email address , what is your first name.

I tried adding you but I cant find you when I search. Just try searching the group. My name is Melissa :)

Hi I just joined that group Glenda. I just had fb message today from a mum who has four year old son affected. So thought i would google Frasers again to see what is happening. They have isolated the gene on Chromosome 4. Can have genetic testing done to see if a carrier etc. So i suppose they might be able to do genetic testing when pregnant. please let us know when baby has safely arrived. Your welcome to email me chris@chrismcqueenimages.com. Glenda we haven't spoken for years. Hope you are well? I live in Kyogle now. Moved back closer to the farm. But live in town as I am photographer and have studio room here. After everything I went through I now specialise in newborn photography. I am also Heartfelt photographer for Northern Rivers. http://www.heartfelt.org.au/ i think after the loss , being a registered nurse and pro photographer I was made for heartfelt. Is heart breaking at times...

Thanks for all this info! We have an amazing nine year old daughter with Fraser Syndrome. I was just googling "support groups" last night and found this. I know that there will come a day when she will want to feel like she's not alone! I will check out the facebook group.