Youth camp, Covid vaccine FAQs, ACEET, Clinical trial, Upcoming events, and all the Latest News from HFNZ |
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The latest from the Haemophilia Foundation of New Zealand - February 2021 |
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Unfortunately, due to staff recruitment, and the uncertainty brought about by the Covid-19 situation, a decision was made to postpone the Youth Camp planned for April/May 2021. This is disappointing for all concerned.
The Blue Skies venue in Kaiapoi has been rebooked for July 2021, with a view to running a comprehensive programme to the benefit of HFNZ youth.
Registration information will be distributed closer to the time, and more information will be available as further planning gets underway. |
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NZ Covid-19 vaccination FAQs |
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This guide answers the following questions:
- Will I be vaccinated sooner because of my bleeding disorder?
- Where will I receive my vaccination?
- Is the COVID-19 vaccination safe for people with bleeding disorders?
- Do I need treatment for my bleeding disorder before I have the vaccine?
- How do I prevent bleeding with the vaccine injection?
- Does my bleeding disorder mean I am more likely to have an allergic reaction?
- Do I need to have the influenza vaccination as well as the COVID-19 vaccine?
The guide was put together using information from the New Zealand Ministry of Health, the Haemophilia Foundation Australia, and the World Federation of Hemophilia. for education and information purposes only and does not replace advice from a treating health professional.
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Hanna used an ACEET grant to help complete her Bachelor in Fine Arts, majoring in fashion design. |
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The Allan Coster Educational Endowment Trust (ACEET) offers grants to help people with haemophilia and other rare bleeding disorders get access to vocational training and education. Over the years, ACEET has helped many people to change their lives, providing them with the financial support for their education that they may not otherwise have been able to access.
The ACEET grants are not just for university study. The ACEET trustees will consider applications for primary, secondary, undergraduate, postgraduate, trades, or vocational training. That means, if you have a bleeding disorder, a dream, and a course that will help you to get where you want to be, then an ACEET grant could be what you need.
Previous recipients have used their grant to complete courses from reading assistance, to business management, to graphic design. If it is going to improve your prospects, then it's worth getting an application in.
Grant applications are considered three times a year. To check the next application deadline, or apply for a grant, just contact your Outreach Worker.
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Hemlibra information from Roche! |
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Roche have put together a new website full of useful and interesting information about Hemlibra (emicizumab).
Covering everything from what it is, to how it works, to news from clinical studies, this is a great way to find out more about this novel treatment.
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Petition of Sue Haldane for Rare Disorders NZ: Reform our healthcare system to include all New Zealanders living with a rare disorder
Petition request
That the House of Representatives urge the Government to acknowledge the universal challenges faced by people living with a rare disease, and the inequity within the current system, by committing to the development of a New Zealand National Rare Disorder Framework.
Petition reason
There are around 300,000 Kiwis living with a rare disease. NZ lags behind most OECD countries in supporting people living with rare disorders and their families to access the best healthcare. We believe a shift in mind-set is needed for rare disorders to stop being considered in isolation, and instead to be regarded as a significant factor within health policy frameworks. This is in alignment with the global rare disease movement headed by Rare Disease International.
Closing date: 17 March 2021
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In order to increase the reach of HFNZ communications, and improve member outcomes, we continue to update member details in the database. The most pressing details are email addresses and dates of birth. Over the coming weeks Outreach Workers will be contacting members to update their details.
Having a current email address for you and your whānau is important as we try to manage costs. Posting invitations and information to members is an expensive business, and where possible we would prefer to make contact electronically. If you have an email address, but you're not sure that we have it, please let us know.
The other essential detail is date of birth. We need this so that we can be sure you're on the list for age-restricted events, like Adult Weekend, Youth Camp, and Women's Weekend. If we have no DOB for you the database won't filter you in to age-based mailing lists. Again, if you're not sure that we have your DOB, please let us know. |
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Are you living with Haemophilia A?
Auckland Clinical Studies (ACS) and P3 Research are looking for volunteers to help study a potential new treatment for congenital Haemophilia A.
To take part in this study you will need to:
- Be male, aged 18 to 75 years
- Have a diagnosis of congenital Haemophilia A
- Be in good health or have other medical conditions that are well controlled.
You cannot:
- Have any other known coagulation or haematologic disorders
- Be taking medication to suppress the immune system
The study involves:
- 2 clinic visits, and a follow up phone call
- All study participants will receive the investigational drug (no placebo)
- You will be reimbursed for attending study visits and for reasonable travel expenses
For more information and to see if you may be eligible:
Auckland: Phone 0800 STUDIES (0800 788 3437) extension 105 or 157 to speak with one of our team, or apply online by visiting www.clinicalstudies.co.nz and follow the links to our ‘Register interest/Register now’ page
Wellington: Phone 0800 737 883 to speak with one of our team, or apply online by visiting www.p3research.co.nz and follow the links to the 'current studies' page.
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17th WFH International Musculoskeletal Congress |
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Registration for the virtual edition of the 17th WFH International Musculoskeletal Congress is now open. Take advantage of our early-bird discount and register before the deadline of March 5, 2021 to save!
The easiest way to register is using our easy, efficient, and secure online system. Simply follow the steps to register online and you will receive an email notification within 24 hours.
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Our next walk is set down for Sunday, 28th of February, meeting at 8:45am for a 9:00am start.
The plan is to undertake the Coastal Path Lyttleton, which connects Magazine Bay, Corsair and Cass Bay beaches, with spectacular views of Whakaraupo/Lyttleton Harbour, Otamahua/Quail Island opposite. We will stop for a picnic (BYO) on our return to Lyttleton. A wide well formed track that follows the coastline above the shore and passes Magazine and Corsair Bay before arriving at Cass Bay. From Cass Bay, we follow a track above the playground to enter Pony Point Reserve which offers a circuit walk with great harbour views.
Keep an eye on your inbox for more info, if you're in the Christchurch area.
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Here's what HFNZ have lined up for members in the coming months:
Youth Camp
Postponed until July 2021.
Blue Skies, Kaiapoi.
Women's Weekend
2021. Date and venue to be advised.
National Family Camp
2022. Date and venue to be advised.
If you have any questions about any of these events, please don't hesitate to drop us a line at info@haemophilia.org.nz. |
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