Cystic Fibrosis is NZ's most common life-threatening inherited disease and the CF Association is the only national organisation dedicated to all aspects of the condition.

Web Links

 

DEVELOPMENT OF THE

 

CFANZ ADULT NETWORK & GENERAL GROUP

Over recent months, it has become apparent from our members that there has been a need for the development of networking groups.  These are to assist in creating links with each other, opportunities to have ‘open forum’ discussions about CF related issues and to have a place where people can glean support from others in similar situations around New Zealand.  Links, photos and videos can be uploaded onto these sites via an admin person for the benefit of members.

At present, Facebook seems to be the method of choice.  Two groups have been set up to meet this need and are open for people to join via an admin or by letting the National Office know. These are: 

CFANZ ADULT NETWORK

                                                                The CFANZ Adults Network is targeted specifically for CF adults.  All adults on the email list of the CF Adult Rep have been notified and invites have been sent to those who have indicated they wish to join. It functions as a closed group for CF Adults and their partners to create a means of connecting with others in similar situations.

Due to cross-infection issues being so important in the CF population, this site provides a means of developing friendships that otherwise would be restricted. For anyone wishing to join this network, they can contact Lisa Borkus (contact details below). For those not on Facebook, but would like to connect in some way, can contact Lisa who can arrange that.

 

  CFANZ GROUP

                                                        

This closed group has been developed for carers and supporters of people with Cystic Fibrosis in New Zealand. People invited or who would like to join this group will be either parents, grandparents, partners or carers of PWCF, siblings, AWCF or others who have some form of link to the CF community.

For anyone wanting to join, they can follow this link:

 

http://www.facebook.com/group.php?gid=153844877119&ref=search&sid=736614151.3717086275..1

 

  They would than be accepted onto the network by an admin ( Lisa Borkus, Stephanie Payne or Kate Russell) or alternatively they can send a request to Lisa/Steph/ National Office and an invite can be sent to them via their Facebook page.

Facebook main admin contacts:  

 

Lisa Borkus, www.facebook.com/lisa.borkus

 

 

 The following is by no means exhaustive; it is purely a list of sites on various topics that you might find useful, even if only as a place to start. Many of them have their own 'links page', referring you to yet more sites on particular subjects - Happy surfing!

 

  • www.breath4cf.co.nz
    Ironman New Zealand Fundraising for CF.
  • www.fundraiseonline.co.nz
    Fundraising portal for online donations to Breath4CF.
  • www.ecfs.eu - The website for CF Europe which has some good articles, newsletters and information
  • www.carers.net.nz
    A fantastic resource for all carers of people with personal health needs.
  • www.cfri.org
    Website of CF Research Incorporated; has some good articles in the newsletters online.
  • www.mycysticfibrosis.com
    Designed to help with living everyday with CF; has a personal interactive diary for recording your own info, and you can ask questions of various medical experts.
  • www.healingwell.com/library/cysticfibrosis
    Has an excellent description of CF, treatments, and the outlook for the future, as well as articles of general interest.
  • www.cfww.org
    The amalgamated International Assoc. of CF Adults and the International CF (Mucoviscidosis) Assn; has various articles and a very good newsletter online.
  • www.kidshealth.org
    An excellent site on all aspects of health, including sections for kids, teens, and parents.
  • www.cftrust.org.uk
    Has particularly good sections on latest research and nutrition.
  • www.cystic-l.org
    CF information & support; the 'handbook' contains very comprehensive info on all aspects of CF.
  • www.cysticfibrosis.co.uk
    Solvay hosted website on the latest happenings in the CF world.
  • www.curekids.org.nz
    The site of the Child Health Research Foundation; has general articles and research news, and contains the application form for CF Research funds available from the CF Association of New Zealand.
  • www.cysticfibrosis.ca
    The section 'designed for persons with CF' is excellent.
  • www.intelihealth.com
    Has some really sound advice and information on complementary and alternative medicine.
  • www.cff.org
    Great for information on latest research.
  • www.bravekids.org
    For children with a chronic illness.
  • www.cysticfibrosisqld.org.au
    Has a very good section on CF in school.
  • www.bmj.com
    Site of the British Medical Journal, where you can access a multitude of articles on CF - just use the search facility.
  • www.osteoporosis.ca
    All about osteoporosis, and contains a 'calcium calculator' with which you can check if you're getting enough calcium.
  • www.pseudomonas.com
    About the Pseudomonas Genome Project.
  • www.cfv.org.au
    Interesting newsletters for adults with CF available online; also has a chatroom operating at least two evenings a week.
  • www.carers.net.nz
    A great site with advice and info for all those who look after a person with a disability.
  • www.newscientist.com
    Latest developments in CF research; use the search facility.
  • www.2ndwind.org
    A site from a lung transplantee support group; the member's stories are good, as are the information sheets.
  • www.liv.ac.uk/cfgd
    Website of the Cochrane Collaboration CF Review Group; 'helping people make well-informed decisions about healthcare by preparing, maintaining & promoting the accessibility of systematic reviews of the effects of healthcare interventions.'
  • www3.nbnet.nb.ca/normap/CF.htm
    Personal site of a mother with CF, consisting of well over 1000 links to all sorts of CF topics, updated regularly.
  • www.parent2parent.org.nz
    Parent to Parent NZ is an information and support network for parents of children with special needs ranging from the very common to the most rare conditions
  • www.healthpoint.co.nz
    A great source of information regarding health services for respiratory conditions.
  • www.atmcoalition.org.nz
    A coalition of not for profits working together for better access to medications for all New Zealanders. 


If you find another site that is particularly useful, and you feel it should be on this list, please contact Kate Russell on               0800 651122         0800 651122 or email kate@cfnz.org.nz

Page Top