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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.

Cambridge MP Daniel Zeichner visits!

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

Our CEO is in high demand!

Rick has been published three times this Autumn

The 2021 Student Voice Prize is now OPEN 

We’re challenging medical students to #DareToThinkRare for the 8th annual SVP essay competition!

Meet our new team!

Say hello to our 2021-2023 Patient Group Engagement Committee members!

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

13 October, 2021 / Findacure News, Home Page

OUT NOW – Smart People: Rick Thompson and Lucy McKay

Our CEO Dr Rick Thompson and Medics 4 Rare Diseases CEO Lucy McKay have delivered a thought-provoking article for PharmaTimes magazine on the UK Rare Diseases Framework and current rare disease landscape. Dive deep with two brilliant CEOs to explore the changes they want to see happen now!
Read More
13 October, 2021 / Findacure News, Home Page

Cambridge MP Daniel Zeichner presented the Prime Minister’s Points of Light Award to our co-founders, Dr Nick Sireau and Dr Anthony Hall!

The Prime Minister has named Dr Nick Sireau and Dr Anthony Hall, the founders of Findacure, Points of Light awardees for driving awareness, research and treatment into rare diseases! Daniel Zeichner MP for Cambridge presented the Points of Light Award to Dr Sireau and Dr Hall on Friday, 8 October, at the Findacure office on 66 Devonshire Road.
Read More

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Thu 28

RareChat | Raising the profile of your condition

28th October at 10:00 am - 11:30 am
Thu 28

RareChat | Raising the profile of your condition

28th October at 10:00 am - 11:30 am
Nov 03

Masterclass | Public Speaking and Presenting for Patient Group Leaders

3rd November at 11:00 am - 17th November at 12:30 am
Nov 30

Online workshop | Getting involved in research and trial design

30th November at 11:00 am - 2nd December at 1:00 pm

From the blog

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!

Isabela & Alice: Raising awareness of Infantile Neuroaxonal Dystrophy

This week’s blog is written by Isabela Ribeiro, mother to three-year-old Alice who was diagnosed with Infantile Neuroaxonal Dystrophy (INAD). Isabela became a volunteer at the INADcure foundation after her daughter was diagnosed with the ultra-rare disease INAD. She has been raising awareness of this unknown rare condition ever since in Brazil and beyond. This is Isabela and Alice’s story!

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