Community

Our Stickler community is diverse and inclusive; it is made up of all ages, and all backgrounds across the UK. By becoming involved in this community, your experiences can also help to provide solutions and signposting for others who may not currently be connected with us.

And remember, it’s not just people diagnosed with Stickler Syndrome who are affected by it; we want to involve the family members and other support networks to get the best possible outcomes for everyone (they are a key part of our community too).

For so many, social media plays a vital role in day-to-day communication, sharing experiences and providing an essential voice of support – and the charity seeks to embrace those existing channels by working alongside them to help identify gaps in how we are informed and supported.

And let’s not forget that our medical professionals are a critical part of our community too. As ‘Care Navigation’ becomes a focal point of our healthcare structure we need to work with them to help progress referral, assessment, treatment, and continued research.