Unique is a registered charity that supports families affected by rare chromosome and gene disorders. We currently have over 29,000 members worldwide in 120 countries.This year we turn 40 so we’d like to hear more from you about your experiences, what you think of the support we offer, and what you think our focus should be over the coming years.

We are interested in hearing from everyone in the rare chromosome and gene disorder community - parents, carers, family members and affected individuals. You do not need to be a member of Unique to take part. 

The survey will take approximately 20 minutes to complete, you don’t need to complete it all in one go and you can return to it at any time. Any questions marked with a red star are required. The survey will close on 14 July 2024. 

The information you provide will be invaluable to help us better understand the needs of the rare chromosome and gene disorder community and planning our work accordingly.

We will use the survey responses to understand:
- The challenges faced by families affected by rare chromosome and gene disorders.
- Why people join Unique (or don't) and how the needs of our membership change over time.
- How we could improve and share the benefits of Unique membership and services.

We will also use the information to:
- Plan and prioritise our focus and services over the next few years.
- Evidence the need and impact of our support.
- Educate professionals and the wider public about the impact of living with rare chromosome and gene disorders.

We will also share our findings on social media and on our website. 

Your answers will be anonymous unless you choose to provide your email address to enter our prize draw or to be notified about future opportunities to be involved in our work. It will not be linked to your answers when analysing the responses. 

As a thank you for taking part, you will have the chance to enter a £50 prize draw - just enter your email address at the end of the survey. 

If you have any problems completing the survey, or any questions please email info@rarechromo.org.