Contact a Family is a UK charity for families with disabled children. They offer information on specific conditions and rare disorders. They have an excellent page on how to apply for benefits such as Personal Independence Payment.

The British Society for Genetic Medicine has an interesting web site that explains how genetic counselling can be obtained and how it may help you.

The PCD Family Support Group is a member of Genetic Alliance UK which is a national charity of over 130 patient organisations, supporting all those affected by genetic conditions’. For more information please click on this link

If you have Karteneger’s syndrome or dextrocardia we would recommend that you wear a bracelet or necklace to explain your medical condition. They are available from Medicalert

Henleys Medical Supplies provide the Acapella physiotherapy aid which you may like to discuss using with your physiotherapist.

The PCD Family Support Group has worked with the Jeans for Genes Charity for a number of years. The Charity’s mission is to change the world for children with genetic disorders by funding research into the causes and cures of genetic conditions and by providing vital funding for care and support.

Fiona’s interview on Colourful FM listen here (mp3 8.4 Mb)

Bronchiectasis is a website created by a patient to explain what bronchiectasis is and the treatment options.

Rajinder Kang, a PCD Specialist Physiotherapist from the PCD Paediatric Management Team at Leicester has created some useful resources to help explain the genetics of PCD to younger children Red Shoe Story and a story  Finding A Home to highlight the importance of hand hygiene, general health and the importance of doing their physiotherapy.

Keeping ahead of COVID-19

Covid-19 is very unsettling for all of our PCD community – we will be regularly updating this page with latest information and ideas on how to keep yourselves entertained whilst self-isolating.