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.

Student Voice Essay Prize

Our annual essay competition, in partnership with M4RD, has now launched!

Drug Repurposing for Rare Diseases 7th Annual Conference

Early bird tickets are on sale now!

Come to our drug repurposing workshop this November!

Our ‘Diving into Drug Repurposing’ workshop will be held in London on 5th November

Findacure receives £330,000 from National Lottery Community Fund

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 peer 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 and resources

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

Bringing the community together

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

[image description: Libbie and team wearing facepaint]
30 August, 2019 / Findacure News, Home Page

Saying goodbye to our Patient Group Development Manager, Libbie!

It is with great sadness that we announce Libbie, our Patient Group Development Manager, will be leaving the charity in late-September.
Read More
15 August, 2019 / Findacure News, Home Page

We’re recruiting a Fundraising Manager!

Findacure is recruiting a Fundraising Manager to help us raise the crucial funds we need to run our patient empowerment programme. We're looking for someone who is proactive and has experience in fundraising to join our small, hardworking team based just a few minutes' walk from Cambridge train station.
Read More

Come to an event

« October 2019 » loading...
Nov 05

Workshop: Diving into drug repurposing

5th November at 10:30 am - 4:30 pm
Feb 24

Drug Repurposing for Rare Diseases 7th Annual Conference

24th February, 2020 at 9:30 am - 6:00 pm
Mar 08

Cambridge Half Marathon 2020

8th March, 2020 at 9:00 am - 12:00 pm

From the blog

Building a rare disease patient registry

Building a rare disease patient registryOn 17th September, Findacure ran a workshop in London entitled 'Building a rare disease patient registry'. The event was comprised of talks about registries...

Our trip to RAREsummit19

On 23rd September, Rick and Mary Rose attended Cambridge Rare Disease Network’s RAREsummit at the Wellcome Genone Genome Campus in Hinxton.

Show your support for the Student Voice!

Looking to raise awareness of your rare disease among medical professionals? Then look no further as we have the ideal opportunity for you.

Rare disease spotlight: EB 2020

Taking place from 19 – 23 January 2020 in London, UK, for the first time the world’s leading experts in EB research, clinical management, and the EB Community will be brought together in one place – the 2020 EB World Congress.

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