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Links

On this page are some of the many internet links that can provide you with further information about Cystic Fibrosis.  CFNZ encourages safe web surfing, and each link below is a reputable source.

Other CF Organisations

Cystic Fibrosis Worldwide (www.cfww.org )  is a non-profit organization located in Massachusetts, USA and Izmir, Turkey. CFW is dedicated to improving quality of life and life expectancy for people living with cystic fibrosis.

The European Cystic Fibrosis Society (www.ecfs.eu ) The European Cystic Fibrosis Society provides an international forum on all aspects of Cystic Fibrosis. The ECFS champions and fosters the best possible care for people with cystic fibrosis. The ECFS addresses these challenges through the promotion of high quality research and education.

Cystic Fibrosis Research, Inc. (www.cfri.org )exists to fund research, to provide educational and personal support, and to spread awareness of cystic fibrosis.

CF Trust, United Kingdom (www.cftrust.org.uk ) are the only UK-wide charity making a daily difference to the lives of people with cystic fibrosis, and those who care for them.

Cystic Fibrosis Canada ( www.cysticfibrosis.ca )is an internationally-recognized leader in CF research, innovation, and clinical care.

Cystic Fibrosis Foundation (www.cff.org ) are a nonprofit donor-supported organization dedicated to attacking cystic fibrosis from every angle. Our focus is to support the development of new drugs to fight the disease, improve the quality of life for those with CF, and ultimately to find a cure.

Cystic Fibrosis Australia (www.cysticfibrosis.org.au ) provides support and services to people with Cystic Fibrosis (CF) and their carers and families. This is complemented by a commitment to research and a quality improvement programme focussing on improved clinical care for people with CF.

Cystic Fibrosis Research News (www.ecfs.eu/cf-research-news) is the companion online journal to the Journal of Cystic Fibrosis. All authors of articles accepted for publication in the Journal of Cystic Fibrosis are asked to submit a summary of their work for the CF community. You can search for topics to keep up to date with latest research.

Resources

Carers NZ (www.carers.net.nz )is charity which provides information, advice, learning and support for families with health and disability needs.

Parent to Parent NZ (www.parent2parent.org.nz ) seeks to support, educate and empower families who have a child or family member with disabilities, health impairments or special needs. As our name implies, we aspire to capture the essence of experiences, strengths, and hopes of parents supporting parents

Cure Kids NZ (www.curekids.org.nz ) our purpose is simple. Every single day, we’re driven to find cures for the life-threatening illnesses that affect many of our children.

Fundraise Online (www.fundraiseonline.co.nz ) aims to assist with raising funds, simply and securely.

The Royal Society of New Zealand has fact sheets about gene editing technologies being developed that hope to cure cystic fibrosis.

Facebook

CFNZ Group page: http://www.facebook.com/groups/153844877119/ This closed group has been developed for the carers and supporters of people with Cystic Fibrosis in New Zealand.

CF Adult page:  https://www.facebook.com/groups/135748981173/ The CFANZ Adults page is targeted specifically for CF Adults and their partners. The page functions as a closed group, to create a means of connecting with others in similar situations, where cross-infection issues would otherwise restrict this connectivity.

Cystic Fibrosis NZ Research page:  http://www.facebook.com/groups/260687967322126/ This page is for people with an interest in Cystic Fibrosis research to post anything new or exciting for others to read and share.

CF Western Australia : CF Smart https://www.facebook.com/cfsmarteducation The purpose of this page is to interact with parents and young adults who have CF, to share tips about CF in school or child care and to ask for feedback about parts of the CF Smart programme.

HealingWell.com (www.healingwell.com/cysticfibrosis ) is a community where people come together, reach out, find support and understanding, and share what works for them with others, whilst dealing with chronic illness.

KidsHealth (www.kidshealth.org ) is more than just the facts about health. As part of The Nemours Foundation’s Center for Children’s Health Media, KidsHealth also provides families with perspective, advice, and comfort about a wide range of physical, emotional, and behavioral issues that affect children and teens.

Youtube clips

PARI TurboBOY® S: How to use and carry out cleaning procedure
http://www.youtube.com/watch?v=yh2_4WmDopw
 
PARI TurboBOY® S: How to use and carry out cleaning procedure includes note about Pari PEP S
http://www.youtube.com/watch?v=PM15NYGXAtE
 
PARI Proneb Ultra II: Learn how to change the air filter on the PARI Proneb Ultra II
http://www.youtube.com/watch?v=fWtwwwgiMfM
 
PARI Proneb Ultra II: Learn how to prepare the PARI Proneb Ultra II
http://www.youtube.com/watch?v=S9WpKQnFNf0
 
PARI LC Sprint reusable nebulizer: instructional product video.
http://www.youtube.com/watch?v=yINsEABOrbY
 
Cleaning & Disinfecting Your Altera or eFlow Nebulizer
http://www.youtube.com/watch?v=7UpEellTSak
 
Acapella: Use of the acapella PEP device
http://www.youtube.com/watch?v=K_Hu3f3d5no
 
RESPIRATORY CARE: Huff Coughing
http://www.youtube.com/watch?v=qYStVdltzTU