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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.

We’re rebranding!

Hear from our CEO on what our new name will be as of 1 February 2022

Register for the #RareShowcase22

Claim your FREE ticket now to the first International Rare Disease Showcase!

We’re featured in Pharmafile!

Our Marketing and Engagement Manager, Blayne, writes about valuing the patient voice

We’re featured in the ‘Rare Diseases’ Special Report!

Our CEO wrote a piece on pg. 12 about improving the care pathway for rare disease patients and families.

Cambridge MP Daniel Zeichner visits!

Our co-founders were presented with the Prime Minister’s Points of Light Award by Daniel Zeichner

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

14 January, 2022 / Findacure News, Home Page

We’re rebranding! Findacure is becoming…

Big changes are coming on 1 February 2022! We're rebranding! Find out from our CEO which name we've chosen for our charity and let us know what you think on Facebook, LinkedIn or Twitter. We hope you like it!
Read More
23 November, 2021 / Findacure News, Home Page

Get your FREE ticket to the International Rare Disease Showcase!

Tickets are now available for the International Rare Disease Showcase! Explore international collaborations that are driving rare disease forward. Come discover the impact and challenges of working in the rare space around the world. Whether you wish to attend a single session or three days of fun, claim your FREE ticket to The International Rare Disease Showcase today!
Read More

Come to an event


From the blog

Discover the #WhoseVoice campaign!

Delve into RareQoL and Rare Community Network founder Sondra Butterworth’s #WhoseVoice campaign. Sondra shared her motivation behind launching the campaign with us, and encourages everyone to get involved. Learn what the #WhoseVoice campaign seeks to address, and film your rare disease story for Rare Disease Day on the 28th February 2022!

Meet our new graphic design intern, Freya!

For this week’s blog, we want to introduce you to our new graphic design intern, Freya! Freya is jointly interning with Findacure and Costello Medical. Get to know Freya and do say hello!

Healx answers your questions!

Healx asked for your questions about the world of rare disease treatment development, and you delivered! View the answers to your questions now by members of the Healx team. Don’t worry if you missed the deadline for submitting questions. They are always there to help if there’s anything you want to know. Just get in touch with them via email or Twitter!

Three reasons to join the Patient Group Pairing Scheme for The 2021 Student Voice Prize!

The Student Voice Prize will return on the 6th October 2021! The Student Voice Prize is an annual, international essay competition that focuses on raising the profile of rare disease within the medical field, particularly with medical students, nurses and scientists who may have never come across rare diseases in their training. Learn three reasons to join this year’s Patient Group Pairing Scheme!

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