NAA10 Families Together is a nonprofit patient organisation set up and run by parents for families with children affected by mutations to the NAA10 gene. Our safe and supportive closed community was created in July 2016 and committee officially formed by a group of our parents in the UK in February 2018.
We are committed to bringing families together worldwide and supporting them through their journey.
We want to ensure families no longer feel isolated upon diagnosis or are left without accurate information. We aim to connect families across the world and support them in sharing their experiences of life with a child with such a rare syndrome.
We will support families by:
providing a secure online community to share their experiences and gain emotional support
providing social media and an online resource to gather information regarding NAA10 in one place for families and professionals to refer to
facilitating and organising events for families
increasing awareness amongst rare disease networks, medical professionals and the wider community
Creating supportive materials for families and professionals
continuing to work closely with our genetic research specialist to feed into and enable future research
raising funds toward supporting the organisation and further research into mutations to the NAA10 gene.
We want to work with professionals to further define the characteristics and support research into these incredibly rare mutations to the NAA10 gene in order to enable faster, clearer diagnosis and improve patient care.
Currently there is only one research team working hard for us, but by supporting and raising funds towards research into NAA10, we will strive to increase our exposure, educate professionals, and establish ourselves within the medical community, in the hope of developing treatments for those with NAA10.
We Want To
Develop and support our community of families of children affected by these rare NAA10 genetic mutations.
Create reliable diagnosis information and support services for families of children affected by NAA10
Support future research .
Raise awareness to both professionals and the wider community, of the NAA10 gene, its resulting syndromes and the unique challenges faced by affected families.
Within our closed community we currently have the most accurate information of diagnosed cases worldwide, and this is currently over 80 diagnosed families. We have families from all across the world : the UK, USA, Canada, Spain, Germany, France, Holland, Norway, Denmark, India and Serbia among many others all brought together.
If you have a diagnosed child please don't hesitate to join us in our supportive and safe online community.