What is Primary Ciliary Dyskinesia?
PCD Research
About
Medical research charity, registered with the UK Charity’s Commission January 2022.
What is PCD
Inherited multi-system disorder that leads to repeated chest infections and worsening lung damage with time.
Need for PCD Research
Currently there are no treatments that have been shown to prevent or reduce permanent lung damage in PCD.
Why PCD Research
Only charity globally funding research towards a cure for PCD and calling for improved standards of care.
1 in 7,500
people have PCD
1 in 20
people are carriers for PCD
50+
genes cause PCD
Donate today
Your donation will help to make sure the world-class research taking place for those who so desperately need it continues.
If we act now, we can create a future where everyone who is born with Primary Ciliary Dyskinesia is supported to live better or cured.
Challenges
01
Heterogenous
Over 50 genes cause PCD and this makes it harder to develop effective treatments.
02
Models of PCD
There is a global shortage of models of PCD. This makes research more difficult, especially when investigating if a treatment can get cilia moving.
03
Delivery
Getting any new therapy deep inside the lungs, past the mucous, to the correct cells, will be challenging.
04
Awareness
There is a lack of awareness about PCD. This impacts funding opportunities, and supports a false belief that PCD is mild. Children with PCD have worse lung function than those with cystic fibrosis.
Research we are funding
0
therapies that reduce or prevent permanent lung damage and decline
<£8
spent on respiratory research per person in the UK with chronic lung disease
£300k
raised by PCD Research since January 2022
Help give people with PCD a brighter future
Aims
Learn more about the vision and mission of PCD Research.
Meet the families
PCD is associated with a huge burden of treatment and disease. Hear people’s stories first hand.
SAP
Meet our global, independent expert Scientific Advisory Panel of 30 experts who peer-review grant applications.
Standard of Care
PCD Research is calling for an improved standard of care, and evidence based treatment for PCD.
Information for Researchers
PCD Research partnerships
AMRC
PCD Research is a member of Association of Medical Research Charities (AMRC) recognising the processes we have put in place to ensure we are funding research of the highest standards.
NATA
PCD Research is partnering with NATA to fund a £250k two year research project aiming to progress the development of mRNA therapy for PCD.
Genetic Alliance
PCD Research is a member of Genetic Alliance, working collaboratively to support rare disease including PCD.
Pinsent Masons
Pinsent Masons represents PCD Research in a pro bono capacity.
Latest news
Find out all the latest news and announcements about PCD, research, grants, clinical trials and more.
Learn more
Recent Events
Founder and Chair of PCD Research, Dr Harriet Holme was invited to talk about the challenges of rare disease at the Lifearc Rare Disease Translational Challenge launch.
In April 2023, 16 people ran the London Landmarks Half Marathon in support of PCD Research, raising £6,000.
Meet the trustees
Have a question?