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.

Join us at our Cambridge Showcase

Taking place on 16th August at Baroosh, our Showcase is a great opportunity to highlight innovative rare disease projects to the Cambridge life science community.

Run projects with greater impact

Social research can strengthen your funding applications and help you run better projects. Learn how to go about it at our next workshop.

Do you dare for rare this summer?

Our summer skydive is back for another exhilarating year! Tick this adrenaline rush off your bucket list and join our team today.

Early-bird for Glasgow Showcase open

Join us as we celebrate rare disease projects taking place in Scotland. Early-bird tickets for our Glasgow Showcase are now available!

Building health economic models

Our e-learning portal is full of resources for patient support groups. Our latest course shares how you can build economic models for your rare disease.

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.

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: A copy of the programme for the Cambridge Rare Disease Showcase. The programme is available in plain text on the event page.]
2 August, 2018 / Findacure News, Home Page

Programme announced for The Cambridge Rare Disease Showcase

Findacure is pleased to announce the lightning talk programme for our Cambridge Rare Disease Showcase! The evening will feature talks...
Read More
[Image description: Infographic showing details of the "Social Research - how to go about it" workshop. The image reads: A #KudosHealthEvent. Our speakers will offer advice and expertise on social research, including best practive and how to avoid common pitfalls. Taking place on Wednesday 19th September in London. A Kudos Health Event in collaboration with Findacure.]
30 July, 2018 / Findacure News, Home Page

New workshop! Social research – how to go about it?

Findacure are teaming up with Kudos Health Research to deliver the next #KudosHealthDay on social research! Whether it be to...
Read More

Come to an event

« August 2018 » loading...
Thu 16

The Cambridge Rare Disease Showcase

16th August at 6:30 pm - 9:00 pm
Sat 25
Thu 16

The Cambridge Rare Disease Showcase

16th August at 6:30 pm - 9:00 pm
Sat 25
Sep 16
Sep 19

Social research – how to go about it?

19th September at 10:00 am - 4:00 pm
Oct 10

The Glasgow Rare Disease Showcase

10th October at 10:00 am - 5:00 pm

From the blog

Treatment barriers in rare diseases: The case of spinal muscular atrophy and nusinersen

The hurdles rare disease patients have to overcome when accessing treatments can seem unending. In this week's blog, Wan-hin Rex from the University of Hong Kong explores the case of spinal muscular...

Sneak preview! The Cambridge Rare Disease Showcase

Our 2018 Cambridge Rare Disease Showcase is fast approaching and the anticipation is building over at Findacure HQ. In this week's blog, we thought we’d give you an exciting look at some of our...

Meet Ike, our summer intern

Meet Findacure’s summer intern, Ikeoluwa Akintola – or Ike for short. Ike has been busy re-writing guides for our e-learning portal to improve their accessibility and flow, and she has written...

Fundraising for rare disease patient groups

Being able to raise funds is critical for any rare disease patient group. While many begin as volunteer-led organisations – often by parents and patients themselves – as these groups grow, look to...

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