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CHILD HEALTH INTERNATIONAL

Helping children with Cystic Fibrosis live life

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Links

Further information on cystic fibrosis is available from:

  • Cystic Fibrosis Trust: http://www.cftrust.org.uk
  • Cystic Fibrosis Europe: http://www.cf-europe.eu/about-cf-europe
  • European Cystic Fibrosis Society (ECFS): http://www.ecfs.eu
  • Wikipedia list of Cystic Fibrosis related organizations: http://en.wikipedia.org/wiki/List_of_cystic_fibrosis_organizations
CHILD HEALTH INTERNATIONAL > Links
1 day ago
Cystic Fibrosis Trust

Can you spare a moment to help CF Europe by filling in their survey? The research will aid understanding on access to CF care across Europe, something we know is hugely variable across countries.

And don’t forget to share, the more people who complete this survey, the better that understanding will be and the greater the benefit to those currently missing out!
... See more

If you’ve got a few minutes this week, please fill out CF Europe’s research survey to help them understand access to CF care and treatments in different countries.
If you're a patient:
https://www.surveymonkey.com/r/QY5VXFS
If you're a caregiver:
https://www.surveymonkey.com/r/Q2JXNVG
If you're a clinician: https://www.surveymonkey.com/r/Q2HD57B
... See more

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2 weeks ago
Kaftrio: Pending EC decision - European Medicines Agency

With important changes recommended by the Committee for Medicinal Products for Human Use (CHMP), potentially giving a much larger proportion of the #CysticFibrosis community access to modern drugs, we cannot ignore the global disparity in care.

Without early diagnosis, and clear pathways to care, these changes exclude many vulnerable people living with cystic fibrosis.

Follow Child Health International to stay updated on our work, sharing expertise and building international medical partnerships to give every child access to the care and the life they deserve.

https://www.ema.europa.eu/en/medicines/human/summaries-opinion/kaftrio-0?fbclid=IwAR2UN4luHWlegngHmcZSI99snwR60Dr1TudT9v5RJUngBl4mEet6FAEYvrc
... See more

Kaftrio: Pending EC decision

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1 month ago

Could you run the London Marathon? Of course you could!

We’re looking for an enthusiastic volunteer to take on this challenge, you do the running, we’ll do the cheering, and together we can raise vital funds for Child Health International’s ongoing work.

If you’re teetering on the edge of volunteering, get in touch today and give us the chance convince you 👍
... See more

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2 months ago
Cystic Fibrosis Trust

Some great resources available through the Cystic Fibrosis Trust

Our last CF LIVE on physiotherapy and exercise saw great discussions on how people are staying active through lockdown. Take a look at some of the brilliant suggestions made by our panel of experts and the cystic fibrosis community on what support is available to warm you up through these winter months! www.cysticfibrosis.org.uk/news/how-to-stay-active-over-lockdown ... See more

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2 months ago

STOP SCROLLING... WE NEED YOUR HELP! 🛑✋

Could you run the @LondonMarathon & help us raise vital funds for #cysticfibrosis care abroad. Of course you could!

We don't care if you run it in 3 hours or 6 hours, if you wear tight shorts or an octopus outfit, we only care that you are committed to changing the lives of children and young adults living with CF.

If not you, do you know someone else that could do it... share this link and tell them to get their running shoes ready!

Find out more about Child Health International or just get in contact 👉 https://bit.ly/2N7XUQL

#CFWarrior
... See more

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