Youth camp, Welcome to Darian Smith, Midland bowling, WFH webinars, Upcoming events, and all the Latest News from HFNZ... |
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The latest from the Haemophilia Foundation of New Zealand - May 2021 |
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Youth Camp is ready, all we need is you! |
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Planning for the HFNZ Seven Summits Youth Camp are well advanced. However, registrations are very low, which puts the camp at risk of not going ahead.
Invitations to register have been sent to the parents of all eligible children, and the Outreach team have followed up with phone calls. If you feel like you've missed out on an invitation, please don't hesitate to contact info@haemophilia.org.nz for more details.
To register your child just click the button below.
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We are booked in to the Youth Lodge at Blue Skies in Kaiapoi, just out of Christchurch, on 16 -20 July. Friday 16 July will be leaders training day, then attendees will arrive on Saturday 17 July.
We understand that some of you may be a little worried about a winter camp in Christchurch. That makes sense, it can get chilly down here. However, we've carefully chosen our venue to make sure we're all nice and warm. Each sleeping room has a panel heater, and the main dining/activity space is also well heated with heat pumps.
We've also planned our programme to ensure that most of our activities are indoors. Our off-site activities include a morning at the YMCA indoor rockclimbing centre, and a visit to the Antarctic exhibition at the museum. We also have the Bomabardier Blood movie, some fun speakers, some great games, and much more.
Growing up is exciting, challenging, and often very confusing. When a bleeding disorder is added to the mix the challenges of young adulthood only increase. Youth Camp, for 10-18 year-olds, uses a combination of education, fun, and peer and mentor support, to help young people move to the next stage of managing their condition. The focus is on being well-informed and better able to make decisions about their bleeding disorder treatment, education, work, life-style and relationships.
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We are very please to welcome our new Northern Outreach Worker, Darian Smith, into the HFNZ whānau. Darian's addition means that we are now at a full staff complement.
Darian has a background in counselling and family therapy and joined HFNZ in 2021 after 11 years as a fieldworker for the Muscular Dystrophy Association of New Zealand. He has a passion for supporting people living with genetic conditions, in part because his wife has myotonic dystrophy.
Outside of work, Darian writes fantasy novels, for which he has received the Sir Julius Vogel Award and Koru Awards. You can find out more about that here: darian-smith.com
Darian is quickly getting up to speed with how HFNZ works, so you can expect to start hearing from him soon.
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Midland Bowl & Social event |
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Korea-ANZ patient alliance meeting |
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On 29 May our youth (18-30) were invited by Sanofi Genzyme Korea to take part in a Korea-ANZ patient alliance meeting. Youth from South Korea, Australia and New Zealand Zoomed in to discuss the treatment environment in their respective countries, as well as the activities that their youth had run in the past and intended to run in the year ahead.
Lauren Phillips presented on behalf of HFNZ. She discussed the health funding model in New Zealand, and provided an overview of the past activities run by the National Youth Committee. Participants were interested to hear about the twinning Programme with Nepal as well as how the foundation provides programmes for and engages women.
Lauren reported that she was particularly impressed with the charity work that the Korean youth do for those in need outside of the bleeding disorders community as a way to build comradery amongst youth.
We hope that further meetings will be held in future to build on the relationship that has now been established. |
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20th Australian Conference on Haemophilia, VWD, and Rare Bleeding Disorders |
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The 20th Australian Conference on Haemophilia, VWD and Rare Bleeding Disorders will take place from 8-9 October 2021 virtually.
If you have ever wanted to attend a conference and couldn’t because of time constraints, travel or costs, this is the perfect time to do so!
The program will be stimulating and informative and there will be presentations from people living with bleeding disorders as well as expert health professionals and other speakers from Australia and around the world.
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The World Federation of Hemophilia has a number of useful educational webinars coming up. These are often at difficult times for us in NZ, but they're well worth it if you can be up at the right time. They are also often recorded, and made available to those who have registered.
Here's what's coming up:
Key Issues in COVID-19 Vaccines for PWBDs Webinar
Webinar on the 3rd WFH Guidelines for the Management of Hemophilia
When: 9 June, 2021, from 5am - 6:30am NZST
Global Youth Leadership Training
When: 19 June, 2021, 5AM - 8AM NZST & 20 June, 1AM - 6AM NZST
More info
Global Summit on Women & Girls with bleeding disorders
When: 8 July, 2021, 2AM - 7AM NZST, 9 July, 1:45AM - 7AM NZST, 10 July, 1:45AM - 5:30AM NZST
More info
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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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Unusually, we had two walks planned for May this year. The first, on 2 May, was up the Rapaki track. This is always a bit of a challenge for new players, but we all got there in the end, and were rewarded with some spectacular views.
The second walk for the month was to have been around the Godley Heads loop track, on 30 May. Sadly, the weather gods didn't come to the party, and the walk was rained off. We'll have a think about rescheduling that one for a later date.
As always these walks are all about having fun, getting fresh air, and seeing friends. Please encourage friends and family to join, we are always keen to add more to our hiking group!
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Here's what HFNZ have lined up for members in the coming months:
Youth Camp
17 - 20 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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