We offer free patient group trainings to help groups form, grow and professionalise.

Our trainings help patient groups 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 free patient group trainings now!

If you’re ready to take your advocacy skills to the next level, apply for one of our guided programmes! Our guided programmes provide tailored support to help rare disease advocacy groups and their leaders reach new, specific milestones; both professionally and personally. Learn more about our guided programmes now.

If you’d like to hear personal accounts from those living with a rare disease, we highly encourage you to listen to the Rarely Heard podcast. Visit the official website to listen to the rarely heard stories of those living with a rare condition. Remember to complete the contact us form to express your interest in sharing your story on the podcast. Listen to the Rarely Heard podcast now!

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!

The Student Voice Prize Patient Group Pairing Scheme gives medical students, nurses and biological sciences undergraduate and masters students the chance to be paired with a rare disease patient group to learn first-hand about their condition and the patient experience. The scheme benefits patient groups because it allows groups to share their story and lived experiences with a doctor, nurse or scientist of tomorrow who may never have considered working with rare disease today. Visit the official Student Voice Prize website to learn more about this scheme!

If you’d like to engage with the rare community to discuss the power and potential of drug repurposing, attend our Drug Repurposing Conference.

If you’d like to engage with the rare community on a national and international level, attend one of our Rare Disease Showcases. Visit our current showcase mini site now to learn more!

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!

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.

Rareminds

Rareminds provides professional counselling and wellbeing resources, training and information for rare disease patient groups and organisations. Their mission is to provide affordable, timely access to highly specialised counselling and wellbeing resources, while raising awareness of the emotional impact of living with a rare condition. Visit Rareminds’ website to learn more.

WellChild

WellChild is the national UK children’s charity that’s making it possible for children and young people with exceptional health needs to be cared for at home instead of hospital, wherever possible. WellChild offers a range of practical and emotional support, trainings and information programmes to give seriously ill children and their families the best chance to thrive; at home. Visit WellChild’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 and cures for rare diseases. Visit Global Genes’ website 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 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!

We offer free patient group trainings to help groups form, grow and professionalise.

Our trainings help patient groups 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 free patient group trainings now!

If you’re ready to take your advocacy skills to the next level, apply for one of our guided programmes! Our guided programmes provide tailored support to help rare disease advocacy groups and their leaders reach new, specific milestones; both professionally and personally. Learn more about our guided programmes now.

If you’d like to hear personal accounts from those living with a rare disease, we highly encourage you to listen to the Rarely Heard podcast. Visit the official website to listen to the rarely heard stories of those living with a rare condition. Remember to complete the contact us form to express your interest in sharing your story on the podcast. Listen to the Rarely Heard podcast now!

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!

The Student Voice Prize Patient Group Pairing Scheme gives medical students, nurses and biological sciences undergraduate and masters students the chance to be paired with a rare disease patient group to learn first-hand about their condition and the patient experience. The scheme benefits patient groups because it allows groups to share their story and lived experiences with a doctor, nurse or scientist of tomorrow who may never have considered working with rare disease today. Visit the official Student Voice Prize website to learn more about this scheme!

If you’d like to engage with the rare community to discuss the power and potential of drug repurposing, attend our Drug Repurposing Conference.

If you’d like to engage with the rare community on a national and international level, attend one of our Rare Disease Showcases. Visit our current showcase mini site now to learn more!

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!

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.

Rareminds

Rareminds provides professional counselling and wellbeing resources, training and information for rare disease patient groups and organisations. Their mission is to provide affordable, timely access to highly specialised counselling and wellbeing resources, while raising awareness of the emotional impact of living with a rare condition. Visit Rareminds’ website to learn more.

WellChild

WellChild is the national UK children’s charity that’s making it possible for children and young people with exceptional health needs to be cared for at home instead of hospital, wherever possible. WellChild offers a range of practical and emotional support, trainings and information programmes to give seriously ill children and their families the best chance to thrive; at home. Visit WellChild’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 and cures for rare diseases. Visit Global Genes’ website 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 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!