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.

Our mentoring programme is open!

Apply before Wednesday 4th March to take part in our 2020-21 patient group
mentoring programme

Drug Repurposing for Rare Diseases 7th Annual Conference

Full programme for the event is now available!

Cambridge Half Marathon 2020

We are thrilled to offerfive lucky runners the opportunity to take part in the 2020 Cambridge Half Marathon with Team Findacure!

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.

Fundraising

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: photo of a previous mentoring cohort smiling at the camera holding their graduation certificates]
31 January, 2020 / Findacure News, Home Page

Applications are open for our patient group mentoring programme!

Are you looking to set up or grow an advocacy group for a rare disease? Or are you looking to share your professional experience and skills to benefit others? Well then, we have some great news for you! We are now recruiting mentees and mentors for the fifth round of our patient group mentoring programme, due to kick off in March 2020.  
Read More
[Image description: screen shot of the conference website homepage ]
28 January, 2020 / Findacure News, Home Page

New conference website and programme!

We are delighted to announce the launch of our new website for Drug Repurposing for Rare Diseases 2020! Our brand new website is an all-in-one source of information, news and updates on our staple Rare Disease Day event. Featuring speaker bios, an evolving event programme, and profiles on our event supporters, our new minisite is a fantastic resource - whether you are a regular attendee or planning your first conference experience.
Read More

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From the blog

Speaker Spotlight – Drug Repurposing for Rare Diseases 2020

With our annual conference, Drug Repurposing for Rare Diseases, just over a week away, things are getting busy in the office. We are preparing delegate packs, writing talks, and chatting to our...

Leading a rare patient group

Our latest workshop on the 22nd January focused on the topic of leadership within a rare patient group. We all know that leadership is a skill we should be very aware of and try to be good at but sometimes it’s hard to know how to start thinking about your own leadership skills. In a patient group context when employees and volunteers are often busy with other things, leaders don’t always have time to reflect on and improve their practice.

Rare Disease Day 2020: Worldwide, Strong and Proud

There’s only a month to go until Rare Disease Day 2020 and this year’s theme focuses on               re-framing rare, to show people that rare is more common than they might think and although rare...

Speaker Spotlight – Drug Repurposing for Rare Diseases 2020

The whole Findacure team are starting to get excited as our annual conference, Drug Repurposing for Rare Diseases, is less than a month away. Having just released our shiny new conference website...

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