7,000 rare diseases. 1 common goal.

We are uniting patients and families from all rare diseases to fight for change together. Join our mission today.

Drug Repurposing for Rare Diseases 2021

We’re back for 2021 entirely online via the Swapcard platform from 15th – 16th June!

Recruitment for our Patient Group Mentoring Programme is now OPEN!

Apply by 4th July

New Online Workshop

Our next online workshop will focus on data use, collection and storage to inform and improve your work!

New RareChat 

Join us on the 23rd June to discuss Community fundraising through COVID-19 and beyond!

7,000 rare diseases have been identified but only 400 have a licensed treatment. We are uniting patients and families across all rare diseases to fight for change together. Will you join us?

Imagine being diagnosed with a disease so rare that there is no known cause, no treatment, no information online, and no support group to turn to. Imagine feeling that no-one, not even your doctors or friends, understand you. This is the situation facing millions of people around the world today. Because while rare diseases are individually rare, having a rare disease is actually common, and experiences of isolation, desperation and loss are far too frequent.

Findacure is a charity that is bringing the rare disease community together. We know that when you combine everybody’s expertise and passion, the rare community becomes an unstoppable force. We encourage patients and parents to grow their own patient communities and to share their experiences with others hoping to do the same. By saving them from reinventing the wheel, we are transforming the lives of rare disease patients together, and we will not stop until they all have the support and treatments they deserve.

What are rare diseases?

Rare diseases are defined as conditions that affect less than 1 in 2,000 people, but they are often much rarer than that. Find out more about the issues that come with rarity in our video or rare diseases page.

Source: Rare Disease UK.

Who do we help?

Strong patient groups are crucial when it comes to rare diseases. Patient groups are organisations set up to support patients and families in all issues related to a specific condition. They connect with and support isolated patients, and are a driving force when it comes to research and campaigning for patients’ rights in healthcare, education, and employment. Most rare disease patient groups are led by a patient, family member or carer whose lives have been turned upside down by a rare diagnosis. While they have the passion and motivation needed, they often lack the experience, knowledge and confidence to fulfil their ambitions. We work with these individuals to improve their skills, confidence, and connections, meaning they can make a bigger difference to patients’ lives.

Meet Wendy

When Wendy’s son was born with Norrie disease, a rare genetic condition that causes blindness, hearing loss and developmental delays, there was no UK organisation for her to turn to for support, and very little information available.

Findacure’s patient group mentoring programme helped Wendy to set up the Norrie Disease Foundation. They registered as an official charity, launched a new website, began a mentoring programme for families, and started a PhD studentship.

Meet Russell

Russell’s son lost his sight over a matter of weeks at the age of 24 due to LHON, a rare hereditary condition. There was very little advice about what was going on and why it was happening.

After struggling to set up a patient support group for two years, Russell and two colleagues attended Findacure’s first workshop. They were inspired by the stories they heard from other rare disease support groups and the LHON Society was born that evening.

Meet Sue

When Sue’s son was born with Pitt Hopkins Syndrome, an ultra-rare condition that causes seizures and difficulties with breathing and learning, there was no patient community for her to turn to for support.

So Sue set one up herself. But with no prior experience in this area, she found it difficult to move forward. Our webinars and workshops have given her the advice and confience she needs to grow her group and make a difference in her community.

What do we do?

Findacure is building a unified and powerful rare disease community. By providing free training to rare disease patient groups, we are helping them to grow and professionalise. Our events bring the whole community together, letting patient groups speak face-to-face with clinicians and pharmaceutical professionals. We also promote drug repurposing as a sustainable model for academic and patient group led clinical trials for rare disease. Our work is made more widely accessible through our e-learning portal. Click the links below to find out more.

Patient group training

Patient groups have a fundamental role in rare diseases. Our training programmes give them the skills and knowledge they need to reach their goals.

Uniting communities

Our community building projects unite patients, doctors and industry to accelerate treatment development and ensure no patients are left behind.

Drug repurposing

Drug repurposing is significantly faster and cheaper than novel drug discovery – ideal for underfunded rare diseases. Our project hopes to advance repurposing projects sustainably.


Take on a sponsored challenge, support one of our simple ongoing appeals, or organise your very own fundraising event.

What’s going on?

Read our latest news

10 June, 2021 / Findacure News, Home Page

Get ready for our next online workshop!

The proof may be in the pudding, but we believe the proof is actually in the data! Our next online workshop will focus on data use, collection and storage. Learn more now and sign up!
Read More
26 May, 2021 / Findacure News, Home Page

Recruitment for the sixth round of our Patient Group Mentoring Programme is now open!

Looking to build or develop your patient group? Searching for opportunities to utilise your skills to benefit others? Sign up today to be a mentee or a mentor on the sixth round of our Patient Group Mentoring Programme! Applications close Sunday 4th July.
Read More

Come to an event

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From the blog

Why the 2021-22 Patient Group Mentoring Programme is for you

This is the year that you reach new milestones, as either a mentee or mentor on the Patient Group Mentoring Programme! Make 2021 the year of growth. Increase your confidence, knowledge and skills alongside your fellow rare disease patient groups and advocates. Learn why you should apply now!

5 reasons why you should attend Drug Repurposing for Rare Diseases 2021

Still haven’t claimed your FREE ticket to Drug Repurposing for Rare Diseases 2021? Here’s 5 reasons why you should attend on the 15th – 16th June.

Experience Huntington’s Disease Alliance’s Family Matters campaign

This week’s blog was written by four Huntington’s disease charities across the UK and Ireland, who are working together to raise awareness of the impact of Huntington’s disease, not just on individuals, but on families too. The Huntington’s Disease Alliance UK and Ireland launched the Family Matters campaign at the beginning of May 2021 with the hopes of promoting an improved understanding of the unique pressures of the disease upon the families it affects. View the campaign!

Thank you for helping to transform the lives of people affected by rare diseases

As the world starts to adapt yet again and we enter a new phase following the pandemic, our team would like to extend its thanks to all those who have supported us on this journey. Thank you to all who have stood by rare disease patients and the work Findacure does – we couldn’t do it without you!

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