If you’d like to learn more about our charity’s vision, mission and aims, visit our Who we are page.
Looking to set up a patient group for your rare condition? Our free patient group trainings will help you reach your advocacy goals by giving you the tools and connections needed to:
- Establish and develop a patient group
- Raise awareness of their rare disease
- Provide support to patients and families
- Get research ready
Learn more about our patient group trainings now and register to attend an in-person, virtual or guided programme!
Join us and the wider rare disease community at an upcoming workshop, webinar, conference, showcase and more! Head to our events page to see what’s coming up.
If you’d like to hear first-hand accounts of what it’s really like to live with a rare disease, we highly encourage you to listen to the Rarely Heard podcast. Visit the official Rarely Heard website now to listen to the rarely heard stories of those living with a rare condition.
If you enjoy blog writing and would like to share your lived experiences, we highly encourage you to write for our blog.
Story sharing is how we can connect as a community and find the strength to continue on our individual journeys. Sharing your story to help others is how you can ensure that no one faces their rare journey alone. Learn more now!
Help us to build a united rare disease community with patient groups at its heart by attending an event, sharing your story on our blog, subscribing to our newsletter or connecting with us on social media.
We’re easy to reach and even easier to engage with! Learn how you can keep in touch with us now.
Recruiting trustees, staff and volunteers
Getting on Board
Getting on Board supports people to become charity trustees, particularly those who are currently under-represented on trustee boards, such as young people, women, people of colour, disabled people, LGBTQ+ people, working-class people and people with lived experience of disenfranchisement.
Getting on Board helps charities in their mission to become more representative of the communities they serve by recruiting and retaining trustees from diverse backgrounds and lived experiences. Visit Getting on Board’s website to learn more.
Reach is the leading skills-based volunteering charity and single biggest source of trustees for the voluntary sector in the UK.
Reach helps charities and other non-profits find the skills they need to thrive by connecting them with volunteers who want to share their skills as trustees, advisors or mentors on short-term projects and ongoing operational roles. Visit Reach’s website to learn more!
Mental health resources
We’ve compiled a list of mental health resources for:
- Children and young people
- Mental health and learning disabilities
- Grief and bereavement
You will also find additional support, information and resources for:
- Crisis services/helplines
- Mental health apps
- Specific mental health problems
Download our list of mental health resources now. You are never alone.