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My four year old has a rare genetic disorder that only 150 have been diagnosed with in.


Posted by Xoskyexo, 17th February 2020


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  • As the others suggested – check facebook. Also try talking with the specialist as they will probably know of others in their field who may be able to link you up with someone. If, by chance you don’t find a facebook group you can start one. Maybe invite people to get in touch on the page :)


  • If you take your child to any specialist medical practitioners I suggest you ask them,
    Some counsellors or occupational therapists at hospitals may have lists.
    Try using the name of the condition in your telephone listing….or google. Bear in mind that most places in it are American ones. I wish you have name the disorder as somebody may have had a positive result for you


  • Try to Google or use Facebook search.


  • Try googling for support groups. Check Facebook. Ask your medical team.


  • Hi, I’m sure there would be some groups possibly on Facebook. I, myself and two of my boys have a inherited genetic disorder and there are a few groups that I am in on Facebook. A couple of them are worldwide which is really good, knowing that there are other people that are going through the same type of things/conditions that myself and my boys have.


  • It’s highly likely you will find something suitable online that will help you. Maybe ask your GP for some advice and help


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