Mucopolysaccharidosis (MPS1)

My daughter was just informed yesterday that my one year old grand daughter has a very rare genetic disorder. I’m trying to find any support groups in the Richmond Va area to help my daughter through this shocking news, she also has a 2 year old and 8 year old that do not have this


  • Contact Helpline TeamContact Helpline Team Member, Community Moderator

    Welcome to the community, I hope you get lots of support from the other families on here.

    You might find it helpful to get in touch with the MPS Society. They can provide lots of information and support for families affected by MPS1 from diagnosis onwards. You can find out more about all the services they provide here - 

    Keep in touch and take care,


  • Hello, my child is 12 and has MPS II, were in Kingston. Do contact The MPS Society, UK, lots of help and advice, conferences, days out, clinical trials/research, register as newly diagnosed. There's a MPS Society UK facebook group too.  
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