We are the only dedicated support in the UK for families affected by a syndrome without a name – a genetic condition so rare it is often impossible to diagnose.
After two lonely years, we’re desperate to bring our members together again.
By fundraising for us you will be helping us to restart everything from our online discos and Singing Hands events, to face-to-face coffee meets, family events and day trips for those who feel ready to meet up in person.
We also want to restart our outreach programme so we can find all the families out there who need our help – we know there are currently thousands of them feeling isolated and alone, not knowing we exist.
There are so many ways to get involved and anything you can raise, no matter how small, will make a massive difference.
It has never been easier to raise money online, all you need to do is add a donate button to your Facebook and or Instagram posts.