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Worldwide support groups

Our UK PCD specialists work in collaboration with their worldwide counterparts to deliver a consensus view on treatment of PCD. There are a few differences, thought to be because of the way healthcare is funded around the world, such as in the USA, PCD patients use a vibrating vest to do their physiotherapy treatment. Here in the UK, we recommend that patients can get more effective lung clearance by doing other techniques and expensive vest machines are not required. However, they are sometimes considered for patients who have limited mobility. All of the patients groups around the world are regularly in contact with each other and compare notes regarding treatment options and latest research.

If you see something on the internet or social media platforms that is different to the treatment advice you have received from your PCD specialist here in the UK, we recommend you ask them at your next clinic appointment or alternatively give your PCD nurse specialist a call. We are a UK based support group, but there are other support groups around the world that you may wish to get into contact with:

Worldwide support groups

Links to international support groups: