Resources for patient groups
Welcome to our directory for patient groups!
We’ve provided the following information to help you find the answers you need to succeed on your personal rare journey. Discover the trainings, tools and support available to your patient group now!
Beacon resources
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.
External resources: training resources
NCVO
NCVO champions the voluntary sector and volunteering. They represent over 16,000 voluntary organisations, charities, community groups and social enterprises across England. NCVO supports its members by developing practical resources that are designed to support the day-to-day running of their organisation, saving them time to focus on their beneficiaries. Visit NCVO’s website to learn more!
Charity Digital
Charity Digital improves digital awareness and access by connecting charities to the digital expertise and talent they need. Their services help other charities #BeMoreDigital through inspiring content, access to the UK’s only discounted and donated technology platform and connection to the best digital talent in the sector. Discover tools for fundraising, marketing, communications, leadership and more on Charity Digital’s website!
Canva for Nonprofits
The Canva for Nonprofits program gives you access to Canva’s premium design tools for free to help you create impactful marketing and campaign materials. Canva is easy to use and can be accessed by the whole team. Create social media posts, presentations, infographics, websites, reports, posters, flyers, signage and more with this free tool. You’ll even enjoy unlimited access to a library of over 75 million+ premium images and video, plus thousands of fonts, and designer-made templates. Visit Canva’s website to learn more!
The Foundation for Social Improvements (FSI)
The FSI is a registered charity that supports the UK’s vibrant small charity sector through the delivery of free advice and heavily subsidised training in strategy, governance, fundraising and impact. They also deliver the SQA-accredited fundraising qualifications and bespoke consultancy. Membership is free for small charities! Visit the FSI’s website to learn more.
AskCharity
AskCharity is a free service that’s designed to help journalists and charities work together. Journalists can use the platform to find case studies, spokespeople and information from a wide range of charities. Charities can use the platform to build their media contacts and coverage. Visit AskCharity’s website to learn more!
Charities Aid Foundation (CAF)
The CAF is a charity, bank and champion for better giving. They have been helping donors, companies, charities and social organisations to make a bigger impact for over 90 years. The CAF provides the financial support, advice, insight and expertise that charities need to perform at their best. Visit the CAF’s website to learn more.
Google Digital Garage
Discover a range of free learning content that’s designed to help your business and career. You can learn by selecting individual modules or dive right into an entire course. Take advantage of online courses, live trainings, certifications, tools, resources and more. Visit Google Digital Garage’s website to learn more and begin a training on digital marketing, career development or data today!
European Patients’ Academy on Therapeutic Innovation (EUPATI)
EUPATI provides education and training to increase the capacity and capability of patients and patient representatives. EUPATI helps patient leaders and patient groups to understand and meaningfully contribute to medicines research and development (R&D) to improve the availability of medical information for patients and other stakeholders. EUPATI is committed to changing the face of patient engagement through patient education. Visit EUPATI’s website to learn more!
Funded
Whether you’re a charity, non-profit or community group, the Funded Team will help you secure the funding needed to continue and scale your work. Their team of experienced grant funding consultants provide affordable best-in-class writing, consulting and training to significantly improve your chances of securing grant funding. Visit Funded’s website to learn more!
Catalyst
Catalyst is a place to improve your charity’s digital skills. Access free resources, meet peers and attend skills-building workshops and events. Catalyst is there to signpost you to experts in their network who can help you on your digital journey and answer any questions. View Catalyst’s website to learn more!
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 Volunteering
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!
Organisations to get involved with
Genetic Alliance UK
Genetic Alliance UK is the largest alliance of organisations supporting people with genetic, rare and undiagnosed conditions in the UK. They advocate for fast and accurate diagnosis, good quality care and access to the best treatments. Genetic Alliance UK actively supports progress in research. They engage with decision-makers and the public on the challenges faced by the rare community. Visit Genetic Alliance UK’s website to learn more.
Rare Disease UK
Rare Disease UK is the national campaign for people with rare diseases and all who support them. They provide a united voice for the rare disease community by capturing the experiences of patients and families to raise the profile of rare disease across the UK. Rare Disease UK is focused on ensuring that patients and families living with a rare condition have equitable access to high-quality services, treatment and support. Visit Rare Disease UK’s website to learn more.
Gene People
Gene People, previously known as Genetic Disorders UK, is a registered charity with a vision to improve the lives of individuals and families affected by genetic conditions. They are a leading source of information and support for both those affected by a genetic condition and the charities and patient groups that support them. Gene People runs a Genetic Counsellor-led Helpline for those affected by a genetic condition and their families. They also support a Partnership Network of patient organisations working with those living with genetic conditions. Visit Gene People’s website to learn more.
EURORDIS
EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 984 rare disease patient organisations in 74 countries. They are the voice of 30 million people affected by rare disease throughout Europe. EURORDIS’ mission is to build a strong pan-European community of patient organisations and people living with rare diseases. They are their voice at the European level. Visit EURORDIS’ website to learn more.
Rare Disease International (RDI)
Rare Diseases International (RDI) is the global alliance of Persons Living with a Rare Disease and families across the globe. RDI brings together national and regional rare disease patient organisations, as well as international federations and multi-stakeholder groups, to achieve greater equity for the global community of Persons Living with a Rare Disease. They advocate for rare diseases as an international policy priority through awareness-raising, policy promotion and international collaborations. Visit RDI’s website now to learn more.
Breaking Down Barriers (BDB)
Breaking Down Barriers is a growing network of over 50 organisations that are working together to improve the lives of families from diverse and marginalised communities to ensure that they have equal access to health services. BDB addresses health inequalities and is finding ways to make health services more inclusive and accessible for families. They share good practices and explore new ideas to help educate, empower and promote equity of access to mainstream health services. Visit BDB’s website now to learn more.
Contact
Contact is the charity for families with disabled children. They support families with the best possible guidance and information. Contact brings families together to support each other, and helps them to campaign, volunteer and fundraise to improve life for themselves and others. Visit Contact’s website to learn more.
Global Genes
Global Genes is a leading rare disease advocacy organization with global reach to the worldwide rare community of patients, caregivers, advocates and clinical partners. Global Genes’ mission is to eliminate the challenges of rare disease through public and physician education, building community through social media and supporting research initiatives to find treatments for rare diseases. Visit Global Genes’ website to learn more!
European Patients’ Academy on Therapeutic Innovation (EUPATI)
EUPATI provides education and training to increase the capacity and capability of patients and patient representatives. EUPATI helps patient leaders and patient groups to understand and meaningfully contribute to medicines research and development (R&D) to improve the availability of medical information for patients and other stakeholders. EUPATI is committed to changing the face of patient engagement through patient education. Visit EUPATI’s website to learn more!
RARE Revolution Magazine
RARE Revolution Magazine is a multi-channel digital magazine and platform that’s giving a voice to those affected by RARE conditions. The magazine highlights charities that represent and support those living with a rare condition, as well as shares research and industry insights. Visit RARE Revolution Magazine’s website to learn more!
RARE Youth Revolution
The RARE Youth Revolution is a dedicated news platform for young people to access relevant content centred around rare diseases. The platform is powering up young RARE voices to be heard to empower a future generation of rare disease advocates. Visit RARE Youth Revolution’s website now to learn more!
Mental health resources
We’ve compiled a list of mental health resources for:
- Children and young people
- Families
- Mental health and learning disabilities
- Grief and bereavement
You will also find additional support, information and resources for:
- Counselling
- Crisis services/helplines
- Mental health apps
- Specific mental health problems
Download our list of mental health resources now. You are never alone.
Annual awareness days to get invovled in
