Bringing X-traordinarily Rare Families Together

Welcome

Our children are so amazing and rare -they are 1 in 11 million!

We are NAA10 Families Together, the patient support organisation for parents & guardians of children affected by mutations to the NAA10 gene. This includes Lenz microphthalmia and NAA10 related syndrome/Ogden syndrome.

Newly diagnosed? Looking for support?

We have all been in your shoes, you are no longer alone. 
 

If you have a child with a diagnosis of NAA10 mutation, you can request to join our closed community for parents.

NAA10 family enjoying the trampoline
NAA10 family enjoying the trampoline

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Happy NAA10 girl enjoying the sun
Happy NAA10 girl enjoying the sun

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Happy young French NAA10 girl
Happy young French NAA10 girl

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NAA10 family enjoying the trampoline
NAA10 family enjoying the trampoline

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USA NAA10 families meet up
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French NAA10 families meet
Dutch and UK NAA10 families enjoying time together

Join our community of families

 

Raising a child affected by NAA10 can be such an isolating experience. By joining NAA10 Families Together you will be able to make contact with others who can share their experiences and support you when facing the ever-changing challenges of bringing up a child with NAA10 syndrome and understand how worrying and frustrating it can be.

‘Before finding this rare community there was nowhere I could be part of something, I was alone. It is important for me to have somewhere where we are all ‘in the same boat’ even though our incredibly rare children have varying needs and difficulties.’
 

NAA10 Families Together Member