Contact Us
New Zealand Organisation for Rare Disorders
PO Box 38-538,
Wellington Mail Centre
Phone: +64 4 471 2226
Email: enquiries@nzord.org.nz
Charities Commission Registration CC22512
Newsletters
2013
1 – Rare Disease Day seminar focussed on medicine access for orphan diseases. 2 – Scottish government gets the message and sets up an orphan drugs access fund. 3 – Ombudsman’s report on exceptional circumstances complaint is delayed. 4 – Carer payments decision from government is also delayed. 5 – Recommended reading: Bad Science, by Ben Goldacre – and hear him speak in NZ next month. 6 – Access to Medicines coalition has been revived.
Many families organising events around the country | Jean Fleming talks rare diseases on “Nights with Bryan Crump” Radio NZ National | Rare Disease Day seminar in Wellington | Raise awareness and raise funds for your chosen condition | Super-fit athletes get into gear for Rare Diseases | It’s a global effort. We are not alone. | The NZ Rare Disease Day theme – support the Rare Gems in our community
Rare Disease Day is one month away. Are your plans in place? | Access to Medicines Coalition is renewing its activity. A chance for more groups to get involved. | Help sought from Ombudsman’s Office over Pharmac’s rejection of funding under exceptional circumstances | NZORD’s research institute broadens activities and collaborations | Important decision on carer payments expected in February
2012
Putting patient and family interests into newborn screening criteria | Common themes as groups respond to Ministry consultation on payments to family carers | Two significant clinical trials with NZ connections | Plain packaging submission to Ministry of Health tobacco control team | Recommended reading: The Immortal Life of Henrietta Lacks, by Rebecca Skloot
ICORD launches Yukiwariso declaration on need for rare disease policy and action plans | Consultation on paying family carers to provide disability support | NZORD Submission to select committee on Gambling Harm Reduction Bill | Folic acid decision a severe blow to child health | Health Passport to assist communications in hospital or care settings
New Zealand Rare Disease Day – please take part in our quick online survey | Share your story |Join us on Facebook | Recommended reading
Health select committee to investigate anomalies in medicine funding policies | Detailed work starts on carer payment issues and new carers strategy action plan signalled | Action plan for rare disorders in NZ – progress report | New dimension to discussions at UN and World Health Assembly | Vacancy for Lay Advisory Committee member, Royal College of Pathologists of Australasia | Medical Council consultation on Good Medical Practice
Folic acid fortification of bread back on agenda | Submission on proposed changes to the Health Information Privacy code | NZORD asks Health select committee to investigate anomalies in medicine funding policies | Submission to Pharmac on funding access criteria for special foods | Improvements to paediatric palliative care services under way | A national clinical genetics service, at last
NZ Rare Disease Day, 29 February 2012 | Congratulations to Mike Gourley, supreme Attitude Award winner 2011 | Need a website for your group?
2011
Current reviews of NGO. Implications for support groups? | Pharmac has dropped the ball on highly specialised medicines. Who will pick it up? | Decisions made on long term storage of Guthrie card blood spots from newborn screening. | Government response to select committee report on clinical trials. Positive, but limited by resource constraints. | Display your rare disease information at Paediatric Society conference
Pharmac’s exceptional circumstances policy fails to deliver | Some good things secured in new national services specifications | Carers Alliance We Care! campaign gets 12,000 likes on Facebook, 500 messages to Prime Minister | Seeking information on support groups working with patients and families through natural disasters | NZ Medical Association on fairness in the health system | Joint New Zealand–Australian medicines regulatory agency back on agenda | Select Committee report on clinical trials released | Smokefree Environments Bill passed into law
NZ support groups contribute to rare disease action plan for Australia | Pharmac review of exceptional circumstances scheme awaited | Carers Alliance launches campaign for carers | Support groups supporting patients and families through natural disasters – tell us your experience | NZORD’s submission to Health select committee on Smokefree Environments Bill | NZORD’s submission to ACART on extended storage of gametes and embryos
2010
National Health Board confirms national services and service improvement programmes | Good news in High Court decision on payments to carers, but government signals another appeal | Is there hope for real improvement to the Ministry's disability support services? | Telemedicine boost for Genetic Services and West Coast practitioners | NZORD charitable company wins ethics approval for rare disease biobank collection | Pharmac review of exceptional circumstances scheme delayed | High Court confirms approval of AgResearch Transgenic animals project
National Health Board funds specialist nursing service | NZORD 10 year celebration | Ministry considers controls on natural health products | Pharmac consulting soon on exceptional circumstances scheme for funding medicines | Tobacco control measures announced | Does your support group need a website, or an upgraded one?
National Health Board hits the ground running with several important initiatives | Submission to Maori Affairs select committee on tobacco use | Panel report on high-cost medicines very disappointing | Submission to health select committee inquiry into innovation and clinical trials | Victory at last for AgResearch Transgenic research
Crown Law's approach to Human Rights Tribunal decision on carer payments | BSA lets TVNZ off the hook | NZORD takes folic acid issue to Regulations Review Committee | Rare Diseases Day swamped by Tsunami alert | Research study on undiagnosed conditions.
Human Rights Tribunal decision on carer payments crushed by government appeal | International rare diseases day in New Zealand | NZORD continues support for AgResearch's transgenic animals program | High cost medicines review panel's interim report
2009
#3 - 24 December
Progress on medicine funding and access | promising start on managed clinical networks | disastrous outcome for fortification of bread | NZ Carers strategy in limbo? | Court action impedes research on biological medicines | In other parts of the world
#2 - 7 July
Wait for Folate decision | Approval for pig-cell diabetes trial | HRC 2009 funding grants | Health Ministry maternity action plan | Review panel for access to specialised medicines | Antenatal screening improvements | Managed clinical networks
#1 - 23 March
Obama boosts health research funding | Health Research Council struggles to divide health research cake equitably | Rare diseases getting high priority attention in many countries | Participants wanted for research on experience of genetic services | Medsafe warnings on unsafe and counterfeit medicines | Demise of Bioethics Council | Wrong diagnosis a major cause of poor health outcomes | Major newspaper confused about embryo research advice | Updated Ministry fact sheet on folate fortification of bread
2008
#4 - 17 December
Long Term Conditions programme | Ministry of Health briefing papers to incoming Minister of Health | HPV vaccination programme | Funding 12 month Herceptin treatment | Storage and use of Guthrie cards | Genetic services report jumps hurdles | Health and Disability Commissioner Act and Code of Rights | Investment process for Health Research Council
#3 - 9 September
Medicine strategy a betryal for patients and support groups | Request for copies of studies on long-term conditions | National Screening Unit to lead on improved antenatal screening | Fortification of bread with iodised salt | International Alliance of Patients' Organisations | 2008 Genethics competition | Submission on Living Cell Technologies clinical trial | Two important new vaccine initiatives | NZORD supports AgResearch plans to continue Genetic Modification programme
#2 - 7 May
Not-for-profits celebrate Carers' Strategy | Cervical cancer vaccination programme | Minister rescues Genetic Services report | NZORD's submission on tobacco displays | Public Health Bill - NZORD's submission | 2008 Genethics competition | Screening symposium highlights | Cartwright Report seminar
#1 - 24 January
Medicines Strategy signals significant changes
2007
#5 - 19 December
Medicine Strategy holds promise, despite no immediate action | Progress on Carer Strategy | NZORD 2007 conference | ACART guidelines on surrogacy and gamete donation | International meeting on medicine access | H5N1 Pre-Pandemic Vaccine Consultation
#4 - 20 November
Genetic testing report falls into black hole | Pharmac stakeholder forum | Gametes and embryos in human reproductive research | Good news on PGD undermined by bureaucratic problems | Digital Strategy funds for support group videoconferencing facilities | New opportunities in newborn screening | Health information privacy code changes
#3 - Conference announcement
Announcing NZORD's 2007 conference
#2 - 16 July
Folate fortification of food | Guthrie cards - consent, storage and use | Assisted reproductive technology | Use of human tissue in research | Pneumococcal vaccine funding | Proposed changes to Health Information Privacy Code | Congratulations to Dr Dianne Webster | Newborn hearing screening programme
#1 - 6 May
Genethics competition | Medicine strategy consultation | Pharmac high cost medicines paper | Carer strategy and action plan | Human Tissue Bill | Joint medicines agency | Antenatal Down syndrome screening | Genetic Services report | Meeting needs of people with chronic conditions | UN Convention on the Rights of Persons with Disabilities
2006
#6 - 20 December
Newborn Metabolic Screening | Human Tissue Bill |Draft Guidelines for Autism Spectrum Disorder | Disability Allowance for people in community residential services | New test for long QT syndrome | Consultation on embryos in research | Medicine Strategy discussion document | “Blue Book” available for caregivers of children with Cleft |Therapeutic Products and Medicines Bill | Pharmac adds to Medicine Strategy debate | Happy holidays from NZORD
#5 - 18 September
Folate fortification of food decision close | Proposal to increase iodised salt in commercially baked foods | Action on Genetic Services report | First PGD babies | Growth Hormone Treatment for Prader-Willi Syndrome | Submissions on guidelines for imported stem cell lines and human tissue research | Another successful Genethics competition
#4 - 21 June
Down syndrome screening | Good start to debate on Medicines Strategy | NZORD meets Health Minister | National Screening Unit tightens control on blood spot cards | Positive results from MeNZB vaccination campaign | Report on preventing neural tube defects | Call for South Island Ethics Committee nominations | Revised food and nutrition guidelines for pregnancy and breastfeeding | Organ Donor Bill
#3 - 11 May
Genethics competition | Good news in Medicines Strategy announcement | NZORD submission on Direct-to-Consumer Advertising of prescription medicines | Amended link for International Genetic Alliance position statement
#2 - 13 April
Universal Newborn Hearing Screening | NZ Carers Alliance makes progress | Direct-to-Consumer Advertising of medicines | International Genetic Alliance position statement on rare diseases | Major milestone for MeNZB vaccination | Australia New Zealand Therapeutic Products Authority
#1 - 23 February
Newborn metabolic screening | Using cells from embryonic stem cell lines | Problems with PGD funding | NZ Carers Alliance examines system for disabled people | Progress in MeNZB vaccine programme | Things to look forward to
2005
#10 - 20 December
PGD funding confirmed | Newborn hearing screening programme confirmed | Access to Medicine Coalition wins key objective | NZ Carer Alliance strategy wins support | Positive report on xenotransplantation | Cochrane Library free online
#9 - 15 September
NZORD turns 5 | Possible funding for PGD and newborn hearing screening | Submissions still open on Pharmac’s Operational Policy and Procedures | GenETHICS competition | National Health Committee report on Genetic Services | Correction to medicine spending figures | Conference reminders
#8 - 9 August
Urgent review needed on xenotransplantation restrictions | Increased pharmaceutical budget for 2005-6 | Healthline now free | Pandemic preparedness | Conferences
#7 - 6 July
New Zealand Carers Alliance policy issues | Job vacancy with Fertility NZ | Change of tack for Pharmac? | ODI Disability Advisory Council | Transgenic cows programme
#6 - 30 May
Responce to Pharmac paper on industry funding | Health Research Council grants | NZORD submission on Pharmac Operational Policies and Procedures | NZ Herald article about industry funding | Submission to the Bioethics Council on Xenotransplantation | Spam emails.
#5 - 13 May
Budget announcements for health and health research | 2005 genETHICS competition | Child Health Research Foundation grants | Meningococcal B vaccine
#4 - 30 April
Can we have confidence in Pharmac? | 2005 Influenza vaccination programme | National Health Committee paper on people with chronic conditions | PGD guidelines | Cox-2 inhibitor decision victory | The Boy Whose Skin Fell Off - documentary on epidermolysis bullosa
#3 - 8 March
Applications sought for health statutory bodies | Total Mobility scheme | CancerVoices workshop
#2 - 4 March
Good news from Ministry of Health | Lobby group on access to therapies | Herbal products recalled | Every Child Counts | Xenotransplantation dialogue | Extension of MeNZB vaccine to babies
#1 - 31 January
Letter to Ministry of Health
2004
#12 - 13 DecemberContribute to research on rare disease risks and ethics | Bioethics Council’s discussion - Xenotransplantation | Issues for Public Health in New Zealand | Living with Disability | Changes to system of ethical review | Disability Strategy implementation | Environmental Support Services Review | Study opportunity in not-for-profit management
#11 - 2 November
Comments on PGD guidelines needed | Paediatric Society scores DHB performance | Recommendations on antenatal HIV screening stir controversy | Other screening information |Beware of certain herbal remedies | Nominations sought for Child and Youth Mortality Review committee | New advice on prescribing anti-depressants | Research indicates high stress on doctors
#10 - 7 October
Meningococcal B Immunisation Programme | Whooping cough now epidemic | Dental care of those with complex and chronic conditions | Regulation of human tissue therapies | Mental health information strategy | New Health Research Council portfolio | Reference group consultation for Office for Disability Issues | Draft Guidelines on PGD
#9 - 5 October
Consultation on PGD guidelines
#8 - 9 September
Reducing neural tube defects | Meningococcal B Immunisation Programme | Health Research funding -expert report | GenETHICS competition winner | Special Education services review
#7 - 7 August
Reducing neural tube defects | Complementary and alternative health | Nominations for ethics committees | Submission to Health Research Council on disability research priorities | Another Social Entrepreneur grant | HINZ Information Management Award | British decision on PGD ethics | Office of Rare Diseases Annual Report | DHB nominations
#6 - 16 July
Meningococcal vaccine available | District Health Board nominations | Delays to PGD guidelines | A bouquet to Pharmac | Workshops for family carers | genETHICS competition
#5 - 3 June
NZORD Conference 2004 | NZORD website receives award | Review of Human Tissue collection and use | Pharmac vacancy | Health & Disability research ethical controls | Embryo donation guidelines | Influenza vaccinations and genETHICS competition
#4 - 4 May
NZORD conference registrations | Health & Disability Consumers' Code of Rights | Evidence-based website on complementary and alternative medicine | Human tissue collection and use | Other MoH items of interest | Influenza vaccinations and genETHICS competition
#3 - 30 March
Health & Disability Commissioner's Act and Code of Rights | Influenza Vaccination Campaign | Ministry of Health notices on disease risks and prevention | Ethics, Transgenics and Conference
#2 - 2 March
genETHICS competition for secondary schools | Bioethics Council on transgenics | NZORD Conference
#1 - 30 January
Bioethics - our challenge for the year ahead | Publication from Bioethics Council