7,500 rare diseases. 1 common goal.

We are uniting patients and families from all rare diseases to fight for change together. Join our mission today.

Setting yourself up for fundraising success

Join our online workshop 4th - 6th May

Check out our new e-learning guide on remote working

Resources now available from Drug Repurposing for Rare Diseases 2024

Check out our new e-learning guide on leading a rare patient group

7,500 rare diseases. 1 common goal.

We are uniting patients and families from all rare diseases to fight for change together. Join our mission today.

7,500 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.

BM Manifesto 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 Sarah

When Sarah’s daughter 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.

BM Manifesto’s peer mentoring programme helped Sarah 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 Peter

Peter’s daughter 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, Peterl and two colleagues attended BM Manifesto’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 Michaela

When Michaela’s daughter 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 Michaela 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?

BM Manifesto 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

Promotional graphic for Findacure's RareChat project showing a zoom call with nine smiling rare disease advocates
24 April, 2024 / BM Manifesto News, Home Page

RareChat - Rare Diseases and Mental Health

RareChat is a chance to chat informally to other patient group leaders and advocates in the rare disease community. Each session will have a theme suggested by our community and a BM Manifesto team member to chair the discussion.
Read More
[image description: a photo of three women sat around a table. They are engaged in conversation and two are laughing]
22 April, 2024 / BM Manifesto News, Home Page

Join our online workshop: Setting yourself up for fundraising success

BM Manifesto is delighted to announce its first online workshop, which will provide support and guidance to rare disease patient groups looking to enhance their skills in fundraising. Taking place in interactive 90-minute sessions across three days...
Read More

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From the blog

Webinar: Evaluating the impact of drug repurposing in rare diseases and covid-19

. In our recent webinar BM Manifesto CEO Rick Thompdaughter, and our Scientific Advisor Dr David Cavalla gave an overview of drug repurposing and tried to explain why it is so high on the agenda for covid-19, and why it should be at the forefront of our minds for rare diseases.

Meet Jo, our new Trustee!

In this week's blog, we'd like to introduce you to Jo Pisani. She has been a partner at PwC, where she lead the UK Pharmaceuticals and Lifesciences business. Jo is one of our two newly appointed...

Lucy’s Story: A Mothers Perspective

  Lucy McKay grew up watching her mother grow a rare disease patient support group into a trail-blazing charity. Her eldest brother was affected by MPS II which led her mother to found the MPS...

Women’s Rare Experiences #IWD2024

"How will you help forge a gender equal world? Celebrate women's achievement. Raise awareness against bias. Take action for equality." (IWD.com, 2024) The 2024 #EachforEqual campaign runs all year...

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