Mum to adult sons with rare genetic lung condition, Primary Ciliary Dyskinesia. Also interested in running, watching Rugby and F1.

Joined June 2011
447 Photos and videos
Enjoying the @lifearc1 Translational Centres Annual Showcase. Didn’t realise I am already taking part in their research @ourfuturehealth #raredisease
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Fiona Copeland BEM retweeted
New online! Mouse radial spoke 3 is a metabolic and regulatory hub in cilia bit.ly/3TLKkSe
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Fiona Copeland BEM retweeted
Join us online on Friday to learn more about skeletal Ciliopathies and the importance of support groups #retina #rp #cilia #jeune #joubert #raredisease ciliopathyalliance.org/news-…

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Fiona Copeland BEM retweeted
Join international experts in bronchiectasis to learn more about the latest guidance and research at our World Bronchiectasis Day Webinar register here: europeanlung.org/en/get-invo… Here @Shoemelia talks about the importance of research
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Great to be one of the patient voices at Primary Care Medical Education Conference. #raredisease #pcd #genetics ucl.ac.uk/epidemiology-healt…
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Sad to have lost a great friend pcdsupport.org.uk/news/Sylvi…

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Exciting plans for Cilia27 meeting in Milan #cilia #rarediseases #pcd #rp #pkd #usher #bbs #alstrom
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Good to be back representing @PCD_UK at @BTSrespiratory Winter Meeting today. #pcd #raredisease #respiratory #cilia
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Fiona Copeland BEM retweeted
Excited to join patients from across the globe tomorrow with a great lineup of speakers.
The PCD patient conference 2024 will take place online on Friday, November 29, 2024 from 2:00 to 6:00 pm (CET). Registration and information available on our website: beat-pcd.squarespace.com/eve…
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Fiona Copeland BEM retweeted
Is it a duck or a rabbit ? @ProfJDChalmers
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Delighted to have been asked to attend the first Global PCD Advocacy Summit - lots of great ideas on how to collaborate and how to encourage people to take part in research. Even managed a swift pint in an English pub! @PCD_UK @PCDAustralia @PCDAustralia
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Fiona Copeland BEM retweeted
My daughter is one of the 640 people in the UK to have the rare disease BBS. She’s studying politics at University & does extensive @InclusiveSk8 skating training to manage the many challenges of BBS. @torvillanddean @BritBlindSport please share to raise awareness of rare disease
In honour of Rare Disease Day happening later this week, we want to talk about Bardet-Biedl syndrome (BBS). Feel free to help us spread the word about BBS by sharing these posts with your friends and family. Let's raise awareness together!
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Fiona Copeland BEM retweeted
🧬 On #RareDiseaseDay, we're taking further action to improve the lives of people with rare conditions. This includes: 🧬 research to help speed up diagnosis and treatment 🧬 specialist care as close to home as possible Read our action plan: gov.uk/government/publicatio…
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Fiona Copeland BEM retweeted
The third England Action plan has launched today! At today's Rare Disease Day reception at Westminster the Rt Hon Andrew Stephenson MP, Minister with responsibility for rare diseases will launch the new England Rare Diseases Action Plan 2024. 👀 ow.ly/caFb50QJ9LJ
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Fiona Copeland BEM retweeted
Good to meet up with our Ciliopathy Support Groups on Rare Disease Day! Thanks @GeneticAll_UK for inviting us. #alstrom #lmbbs #pcd #rp #usher #jeune #joubert
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Fiona Copeland BEM retweeted
I’m cycling 100 miles in May to raise funds for @PCD_UK 🫁 🚴‍♀️ Please check out my fundraising story and donate here 👇🏻 2024fordridelondon.enthuse.c… All donations gratefully received 🫶🏻
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