Hi, I am new here! I am a mum to two gorgeous boys, one of which has recently been diagnosed with a rare syndrome called Pierpont syndrome. As it is so rare we are struggling to find much information on it. We were told by our geneticist back in November but are yet to have it in writing. It would be great to hear from anyone who knows of this syndrome or any advice on finding out about rare conditions would be much appreciated.
Welcome to FamilyHub and thanks for introducing yourself.
There are lots of other parents and families on here with all sorts of different experiences so let’s see what they have to say.
It’s great to have you here
All the best,
Welcome @VikkiH You have probably already come across this, but just incase… https://www.raredisease.org.uk/ hope this helps, Frances
Thanks Frances. We have now registered with Rarechromo, hoping they may be able to give us a little info or connect with others with a similar condition.
No problem @VikkiH - let us know how it goes
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