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PCD Research is a UK registered charity that raises money to fund life-saving research for Primary Ciliary Dyskinesia. Help find a cure and donate today!

There are many features but most significantly is the progressive decline in lung function. Primary Ciliary Dyskinesia (PCD) is a rare inherited condition that affects 1 in 6,000 people in the UK. Motile cilia are the microscopic hairs that beat in the airways and sinuses, clearing out secretions and infections. In PCD, the cilia are abnormal and unable to move in the usual way, such that secretions and infections affect the lungs, sinuses, ears and nose. Cilia are also important for the propulsion of s***m, so fertility may be affected too. At present the only treatment for PCD is chest physiotherapy to try to prevent and slow lung function decline. Our aim is to improve treatment options for people with PCD, by funding important and life-saving research. We receive no governmental funding to support our research and rely entirely on the support of the general public to continue to funding pioneering research. If you would like to learn more about our research process, please visit our ‘For Researcher’s‘ section. PCD is a life altering and life shortening condition, and people with PCD have been found to have worse lung function than those with cystic fibrosis. This will mean for some people that they will need a lung-transplant. Help fund a cure today https://www.justgiving.com/campaign/PCDResearch

25/07/2026

Calling all fans! We are going to be auctioning to raise funds for the medical charity pcdresearch_org this official signed shirt and merchandise (authenticity certificate included). Tag friends who might be interested! Wolves

21/06/2026

💙 Helping shape a new pathway for rare disease innovation.

We are proud to have played a role in advocating for, and helping shape, a new regulatory pathway that could make it faster and easier to develop treatments for rare diseases in the UK.

Why does this matter?

Many rare diseases affect very small numbers of people. While the need for treatments is often urgent, the traditional drug development and approval process was designed for much larger patient populations. That can make developing therapies for rare diseases difficult, time-consuming and expensive.

The MHRA’s proposed new framework recognises that rare diseases require a different approach. It aims to create a more flexible pathway that could help innovative therapies reach patients sooner, while maintaining high standards of safety.
For patients and families, this is about more than regulation.

It’s about creating an environment where investment in rare disease therapies becomes more viable.

When the pathway to approval becomes clearer and more achievable, more companies, researchers and investors are willing to develop treatments. More investment can lead to more therapies. More therapies can lead to better outcomes for patients.
Behind every regulatory framework are real people waiting for answers, treatments and hope.

We are proud to have contributed to this work and will continue advocating for a future where innovation reaches rare disease patients faster.

You can read the MHRA announcement and consultation launch, which highlights the development of this proposed framework https://www.gov.uk/government/news/mhra-consults-on-new-regulatory-framework-to-make-uk-a-global-leader-in-rare-disease-therapy-development

💙 Because every patient deserves the opportunity to benefit from scientific progress.

15/06/2026

🧬 What if healthcare could be tailored to you?
Imagine receiving a diagnosis sooner. Accessing a treatment that is more likely to work for you. Avoiding unnecessary tests, delays, or treatments that offer little benefit.
This is the promise of personalised medicine.
By combining advances in genomics, data science and artificial intelligence, healthcare is becoming more precise, more predictive, and more focused on the individual patient.
That’s why PCD Research was pleased to submit written evidence to the House of Lords Science and Technology Committee inquiry into Innovation in the NHS: Personalised Medicine and AI.
In our submission, we highlighted both the opportunities and challenges associated with bringing personalised medicine into routine NHS care. While the science is advancing rapidly, ensuring patients can benefit from these innovations requires the right policies, infrastructure, and pathways to support adoption at scale.
At PCD Research, we believe the goal must be simple: ensuring that everyone who could benefit from these advances is able to access them.
For patients and families, personalised medicine can mean earlier answers, more effective treatments, fewer unnecessary interventions, and a better quality of life.
For society, it can mean helping people stay healthier, remain independent for longer, participate in education and work, and spend more time doing the things that matter most.
The future of healthcare is not one-size-fits-all.
It is personalised, data-driven, and increasingly AI-enabled.
We are delighted to contribute our expertise to this important national conversation and help shape a future where innovation reaches the patients who need it most. 💙

https://lnkd.in/e7HGcvWR

26/03/2026

Delighted to have been asked to contribute to this reporthttps://researchbriefings.files.parliament.uk/documents/POST-PN-0763/POST-PN-0763.pdf

28/02/2026

It’s rare disease day. We are working to make change happen so that it’s will be possible to make treatments that functionally restore genetic diseases at scale. Behind the scenes, things are moving and we can’t wait to share this news with you when we can.

24/11/2025

Sharing a video about The Rare Disease Summit 2025 that we hosted last month to set out how to solve the challenges of rare disease. Share and like to help us raise awareness

Address

The House Of Commons
London
SW1 0AA

Website

http://www.pcdresearch.org/

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