A collection of useful links for HPNers.
Clinical, research and related sites
Australasian Society for Parenteral and Enteral Nutrition www.auspen.org.au AuSPEN is a multidisciplinary society of clinicians focusing on clinical nutrition. Membership includes physicians, surgeons, intensivists, dietitians, pharmacists, nurses and scientists. Australian Therapeutic Goods Administration www.tga.gov.au The Australian site for information on regulations, recalls, and limitations of medications, food and devices for humans and animals. New Zealand Medicines and Medical Devices Safety Authority www.medsafe.govt.nz The New Zealand site for information on regulations, recalls, and limitations of medications, food and devices for humans and animals. ThriveRx thriverx.net ThriveRx is a US national infusion pharmacy providing nutritional support for individuals on PN and/or enteral feeds at home. Go to Clinical Corner and click to listen to webinars and other very interesting information.
Consumer/patient support groups
PACIFHAN www.pacifhan.org International Alliance of Patient Organisations for Chronic Intestinal Failure and Home Artificial Nutrition. PNDU is a founding member of this alliance who’s mission statement is to work together to promote the international sharing of information and resources to improve the quality of life of Home Artificial Nutrition patients. PINNT www.pinnt.com PINNT is our big sister organisation in the UK supporting people on parenteral and enteral nutrition (including Halfpinnt for children). Much of the info here can be easily adapted for PNDUers’ needs. Oley www.oley.org Our big US sister site for consumers of home parenteral and enteral nutrition. Very informative and lots of resources. Un Filo per la Vita www.unfiloperlavita.it The Italian patient support group for people on HPN. Svenska HPN-foreningen barn & ungdom www.hpn.se The Swedish patient support group for people on HPN. Appetite for Life (Apetyt na zycie) www.apetytnazycie.org The Polish patient support group for people on HPN and HEN. Life without Intestine (Zivot bez streva) zivotbezstreva.cz The Czech Republic patient support group for people on HPN. The Kids Foundation www.idfnz.org.nz The Kids Foundation is the welfare arm of IDFNZ (Immune Deficiencies Foundation of New Zealand) and is responsible for caring for small bowel transplant children. The Foundation offers members practical, emotional, medical and social support. Complex Child E-magazine www.complexchild.com Written by parents for parents. Covers different aspects in each update edition. We highly recommend this site for ideas. Feeding Tube Awareness Foundation www.feedingtubeawareness.com A patient support group based in the USA for parents and carers of children who are tube-fed. Young Ostomates United Inc www.youinc.org.au Young Ostomates United is a non-profit organisation that aims to encourage support and friendship between young people with a stoma, their families and friends and to provide resource material to both new and well-established ostomates. Gastroparesis Patient Association for Cures and Treatments www.g-pact.org A patient-driven organisation looking for a cure especially for those with CIP and gastroparesis. IBD Support Australia www.ibdaustralia.org IBD Support Australia is a free, non-profit public message board community set up in Australia primarily for Aussies with Inflammatory Bowel Diseases such as Crohn’s Disease or Ulcerative Colitis, as well as their family members and friends. Crohn’s and Colitis Australia www.crohnsandcolitis.com.au Crohn’s & Colitis Australia support the Crohn’s and colitis community through support programs including education, advocacy, counselling, increasing awareness and generating and utilising funds for research. Crohn’s and Colitis New Zealand www.crohnsandcolitis.org.nz This site provides information about Crohn’s Disease and Ulcerative Colitis for people who suffer from either of these afflictions and their family and friends. Bowel Group for Kids Inc www.bgk.org.au The Bowel Group for Kids is an Australian based charity dedicated to providing emotional support to families of children born with Hirschsprung’s disease, imperforate anus/ano-rectal malformations and associated conditions. ChildFeeding.org www.childfeeding.org This is an Australian site run by passionate health professionals and academics aiming to help parents of children who are tube-fed by sharing experiences, tips and stories from families who know what it’s like.
Sites of interest
Rare Voices Australia www.rarevoices.org.au RVA is Australia’s national organisation advocating for those who live with a rare disease. RVA provides a strong common voice to promote for health policy and a healthcare system that works for those with rare diseases. RVA works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare diseases in Australia. We are the voice of 2 million plus people affected by rare diseases throughout Australia and 70 million globally. Rare Disorders NZ raredisorders.org.nz RDNZ is the only umbrella group for rare disorders in New Zealand and provides a strong common voice to advocate for an equitable healthcare system that works for the more than 377,000 Kiwis with a rare condition. International Rare Disease Day www.rarediseaseday.org Rare disease day is an international project that began in Europe on 29 February 2008. It was originally intended to be celebrated just in leap years, but momentum and enthusiasm among rare disease support groups has meant the day is now an annual event, spreading rapidly around the globe. StomaBags www.stomabags.com/ostomy-support StomaBags is a US site with practical videos on stoma equipment and how to use them. Source Kids www.sourcekids.com.au Source Kids is an information website, e-news and magazine for parents, carers, families, professionals and teachers working with children with special needs. Psuedo Obstruction Research Trust (P.O.R.T.) [UK] www.port-charity.org.uk The aim of this charity is to fund research into Chronic Intestinal Pseudo-obstruction. and raise public and professional awareness into this serious and sometimes fatal condition. The Spoon Theory www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/ Christine Miserandino’s personal story and analogy of what it is like to live with sickness or disability. IV Pole Pals https://www.facebook.com/pages/category/Product-Service/ivPolePals-185062976854/ IV Pole Pals are fun decorations which click easily onto IV poles. A great way to add a bright note to a hospital stay or to stick on the IV pole at home.