Fishing, ACEET, Petition, Clinical trial, Upcoming events, and all the Latest News from HFNZ |
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The latest from the Haemophilia Foundation of New Zealand - January 2021 |
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Fishing: HFNZ hit the water! |
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Since the last issue of Pānui there have been two regional fishing trips!
At the end of November last year a group from the Nelson area took to the high seas for a day out around Rangitoto ki ti Tonga, Durville Island.
Then, just last weekend, the Central crew finally managed to get their trip underway. This was a big relief, as the trip had been postponed a number of times due to weather and Covid.
Both groups appear to have had a fabulous time, despite a bit of a southerly start interfering with the Nelson group's digestion somewhat...
Check out the images below. |
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Lauren used an ACEET grant to help complete her law degree. |
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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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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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Irish Haemophilia Society 2021 Conference |
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The Irish Haemophilia Society have organised a virtual conference over the course of 3 evenings on 1,2 and 3 March from 6pm to 8pm GMT. That's 7am to 9am on 2, 3, and 4 March NZT.
Topics will include Novel Therapies, Gene Therapy, Covid-19 and vaccination and many elements of comprehensive care.
A parallel symposium on von Willebrand’s disorder will take place on 3 March. Conference speakers include speakers from Italy, Canada, and Ireland.
Registration is free of charge but registration is required. If you are interested, please register at www.IHSevents.ie and register as a non- member.
Click here to view the programme.
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Kyle and Ross have come up with a plan for the Southern Walks for 2021. These are a great way to keep fit and get those joints moving.
Here's the proposed list, starting 28 Feb:
- 28 Feb - Coastal path Lyttelton ( Picnic/BBQ)
- 28 Mar - Bowenvale > Sign of the Kiwi Cafe
- 18 Apr - Return to the Mighty R A P A K I
- 30 May - Taylors Mistake > Godley Head
- 27 Jun - South Boundry Track CIrcuit
- 28 Jul - Cashmere > St Martins - Old Stone House River Walk
- 26 Sep - Gebbies Pass > Sign of the Packhorse ( Picnic)
- 31 Oct - Bowenvale ( Alternate start) > Sign of the Kiwi Cafe
- 28 Nov - Bridle Path - Gondola (Picnic)
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
Proposed dates 29 April - 2 May, 2021, to be confirmed
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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