01709 210151 / 07716 135940 kerry.leeson@alstrom.org.uk

The Rare Pride project


One of the main aims of Breaking Down Barriers is to help improve the lives of people from diverse and marginalised communities, to ensure everyone has equal access to health and support services.

One of our mantras is ‘how can organisations and services support diverse communities, if they don’t know or include people within the community’.

There appears to be very little information about the number of people affected by rare conditions who are also part of the LGBTQIA+ community.

By working alongside people with lived experience we want to ensure:

  • voices are heard
  • experiences of healthcare and support services are understood
  • the changes needed are identified

Stark Findings

We know from the stark findings of the report published in 2018, by the charity Stonewall, that people from LGBT communities face many challenges. This report was based on YouGov research* with 5000 lesbian, gay, bi and trans (LGBT) people across England, Scotland and Wales about their life in Britain today.

This report, which is part of a series based on the research, looks at mental health and well-being of LGBT people and investigates specific experiences when accessing healthcare services.

This study shows the rates of depression, anxiety and other mental health conditions among LGBT people. It also looks into the accessibility of healthcare services and discrimination LGBT people face when seeking medical support.

Some of the stark findings were:

  • Half of LGBT people (52 per cent) experienced depression in the last year
  • Research shows LGBT people face widespread discrimination in healthcare settings
  • One in seven LGBT people (14 per cent) avoid seeking healthcare for fear of discrimination from staff

Genetic Alliance UK published the Rare Experience 2020 report* which highlights the lived experience of people affected by genetic, rare and undiagnosed conditions. Findings from this report were based on survey responses from over 1000 people and 2 online workshops.

Some of the stark findings were:

  • People with rare conditions are insufficiently served by the system
  • Much more work needs to be done to improve outcomes and experiences for people affected by genetic conditions
  • Most people have to coordinate their own care which is often extremely complex – ‘professional care coordination is rare but necessary’
  • The report does show some positive experiences, but these are rare and require resources and coordination

With this in mind, we have been working in collaboration with Rareminds, a charity who provide counselling services, wellbeing information and training for people affected by rare conditions. You can find further information about Rareminds HERE

Together, we are starting the ‘Rare Pride’ project to seek experiences from the Rare, LGBTQIA+ community so we can work towards improved healthcare and support services.

Rare Pride is aimed at people with a rare condition/s who identify as Lesbian, Gay, Bisexual, Transgender, Intersex and/or asexual or those who are questioning their sexuality or gender identity. 

Join us for the first get together and have your voice heard!

The first session will be an informal, relaxed get together where you can come along to listen to other people’s experiences. If you would like to join the discussion, you will have the opportunity to talk about your positive experiences and any challenges as well as your hopes and fears for the future.

If you (or someone you support) have a rare condition and are part of the LGBTQIA+ community, we would be delighted if you can join our open and relaxed chat:


When: Tuesday 28th September 2021 at 6:00pm

Where: Zoom


We hope this get together will be the start of working towards improved access to healthcare and support.


Please register HERE


This is a real opportunity for you to be heard and to start driving change!

If you can’t make it, you can still have a say by emailing Catherine Lewis at Catherine.lewis@alstrom.org.uk and sharing your experiences, challenges, hopes, and fears. You can choose to remain completely anonymous.

Our aim is to form a working party to help turn these challenges and hopes into an action plan to improve the lives of LGBTQIA+ people living with a rare condition. We also hope to improve awareness and understanding of gender and sexual diversity

(Please note; by registering for the workshop you agree for Rareminds & Alström Syndrome UK to process the information you provide within GDPR Guidelines and to enable them to contact you about the event and future participation).



Rare-Experience-2020-Report-.pdf (geneticalliance.org.uk)