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!

Next RareChat will focus on patient group experiences of using data!

Come discuss the benefits and complexities of data use within patient groups

Recordings now available

Relive The Virtual Rare Disease Showcase!

We’ve been published

Read our CEO’s article: Rare disease patient groups provide hope to isolated communities

The 2020 Student Voice Prize

The 2020 winning essays have been published in honour of Rare Disease Day!

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.

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

RareChat | Patient group experiences of using data
12 May, 2021 / Findacure News, Home Page

Next RareChat = Patient group experiences of using data!

Our next RareChat will focus on patient group experiences of using data! Join us on Wednesday 26th May at 10am to discuss the benefits and complexities of data use within patient groups. Claim your FREE ticket now!
Read More
[image description: photo of a young girl smiling holding a sign that says why she supports drug repurposing]
31 March, 2021 / Findacure News, Home Page

Drug Repurposing for Rare Diseases Conference 2021 returns!

Our Drug Repurposing for Rare Diseases Conference 2021 is coming back on 15th - 16th June! Our conference will be run entirely online via the Swapcard platform. Registration is NOW OPEN, so hurry over to our website to be amongst the first to sign up and claim your ticket!
Read More

Come to an event

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Wed 26

RareChat | Patient group experiences of using data

26th May at 10:00 am - 11:30 am
Wed 26

RareChat | Patient group experiences of using data

26th May at 10:00 am - 11:30 am
Jun 15

From the blog

The benefits of working with known drugs in the search for rare disease treatments

This week’s blog was written by our 2020-2021 Corporate Partner, Healx! This is the first of their six-part blog series, which will explore the power of drug repurposing in rare disease from a wide variety of perspectives.

Healx is hosting a “Kickstart Drug Repurposing: Finding Treatments for your Rare Disease through Drug Redevelopment” workshop at our virtual Drug Repurposing for Rare Diseases 2021 Conference. Get to know their team and claim your free ticket now to join us on the 15th – 16th June!

Rare Disease Day at Royal Holloway Speed Dating Event

On Friday, 26 February 2021, Royal Holloway ran a virtual event for Secondary School years 10, 11 and 12 in honour of Rare Disease Day. Our Marketing and Engagement Manager, Blayne, signed up for the speed-dating round and spoke to year 10, 11 and 12 students about Findacure. She only had seven minutes per school to deliver her presentation and rotated between seven virtual classrooms. Blayne recaps her talk here!

A look back at our online workshop ‘Supporting your community: Mental health and wellbeing’

Back in March, we hosted a three-day online workshop that focused on mental health and wellbeing within the rare community. The goal of the workshop was to provide patient organisations with an in-depth understanding of mental health and give them the tools to recognise and cope with different mental health situations or challenges that could arise.

Ger Renton: ‘Ethan and Me’

This week’s blog was written by Geraldine Renton, author of Ethan and Me. Ger’s firstborn son, Ethan, had a very rare genetic condition called MPS II Hunter Syndrome and sadly passed away in September 2020. She chronicled her adventures with Ethan on her award-winning blog, ‘It’s me and Ethan’, until she decided to approach Tribes Press to memorialise their story in book form. Ger was kind enough to write a guest blog for us to share her time with Ethan.

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