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Helping children with Cystic Fibrosis live life

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Estonia

Early days 2006 to 2009

Visit to Cardiff March 2014

Visit to Tallin and Tartu October 2014

CHILD HEALTH INTERNATIONAL > Estonia
5 months ago

The National Institute for Health and Care Excellence (NICE) have issued new guidelines on treating CF, strongly supporting the need for regular routine assessments as promoted by CHI. Details here https://www.nice.org.uk/guidance/ng78/chapter/Recommendations#annual-and-routine-reviews ... See more

Evidence-based recommendations on diagnosing and managing cystic fibrosis in all age groups

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5 months ago

Another bit of good news picked up by our friends in Moldova!

This personal trainer with cystic fibrosis has become a true inspiration thanks to his love of Thor.

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7 months ago

Some good news for a change!

Des chercheurs du Centre de recherche du Centre hospitalier de l’Université de Montréal (CRCHUM) ont découvert une piste prometteuse pour améliorer les traitements offerts aux personnes atteintes de fibrose kystique ... See more

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9 months ago

In June a physiotherapist from Athens spent three weeks with the CF team in the University Hospital of Southampton. She is funded by the patients to do community physiotherapy which is an innovative way to get round the lack of physiotherapy provided by the hospital.
Following the visit she said:
“During my placement I was able to understand in more rounded view the needs of patients with cystic fibrosis and learn about the disease itself. The cystic fibrosis hospital team willingly answered my questions, dedicating much time to show me their techniques. I feel comfortable that I can evaluate more effectively a patient’s needs and can create a specialized respiratory physiotherapy session. They also showed me the right way to take notes and archive them properly.
I was able to attend a meeting with the relatives of underage patients designed to offer psychological support and answer relatives questions about the disease and the way they should approach it. I was able to discover the dynamics of a family which had a member with cystic fibrosis and I could understand more clearly the relatives’ concerns, which are sometimes not so obvious for healthcare professionals.
I strongly believe that if we can adopt a few of the techniques and match the level of data keeping of patients’ annual reviews of your hospital, we will reach a step closer to our goals of providing better and more effective treatment, so we can make the everyday life for cystic fibrosis patients and their relatives easier.” ... See more

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