We are excited to announce that we have secured funding of £9,993 from BIG Lottery Fund. We will use this funding to organise an inaugural conference dedicated to r(20) syndrome, bringing together families living with a rare genetic condition with researchers, health and care professionals. This will strengthen the community by creating a peer support network amongst families affected by the condition, and improved health and well-being by raising awareness of the condition and its treatment amongst relevant professionals and the general public.

As part of this project we will also be using some of the funding to purchase essential IT equipment for our Trustees and new volunteer Project Manager, who will help us organise the event. This equipment is also required to help us run our day-to-day support activities and we have some budget for training our Trustees and volunteers too, so they have the tools they need to carry out their work for us.

Additionally this grant will enable us to attend more conferences/events in 2017 representing all those with r(20) syndrome, helping us to continue to forge relationships with healthcare professionals, policymakers and researchers amongst others. This is an important aspect of our charity’s ongoing mission – to continue to raise awareness of r(20) syndrome amongst those who can help make lives better.

We have already initiated organising the event which will take place over a weekend in summer 2017 in the UK; we will be in contact very soon with more details on dates/times and venue and how you can get sign-up to attend.

Keep a lookout for emails coming your way very soon…