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New Zealand Organisation for Rare Disorders

PO Box 38-538,

Wellington Mail Centre

Phone: +64 4 471 2226

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Newsletters

2010

#3 – 4 June 2010
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
#2 – 30 March 2010
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.
#1 – 23 January 2010
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 December
Contribute 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

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