Things are moving along...
Plans are coming together for the HFNZ 60th anniversary celebrations in Wellington in November.
- On Friday November 8 we will have a welcome reception at parliament.
- The main event of the weekend is the Gala Dinner on Saturday November 9. This will be held at Te Papa, and will include members, past and present staff, and special guests.
- The youth committee are looking at running an event on Saturday afternoon as part of our youth twinning with Nepal.
You can expect an invitation in March. RSVPs will be due by June at the latest, so that we can organise flights, accommodation, catering, and seating. Numbers are limited, so get in quick! This is to be an 18 and over event, and there will be a small fee attached to attendance. For those that don't require flights and accommodation the fee will be $50 per person, $100 per person for those who do.
You don't have to wait to receive your invitation - go to hfnz60.lilregie.com to register. For those who need flights and accommodation, we will contact you with options once you have registered to attend.
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2019 HFNZ National Family Camp
Registrations are now open for the 2019 National Family Camp, on April 16 - 19.
Register here: event-5531-4a2a.lilregie.com using the password HFNZ.
The camp will take place in the first week of the April school holidays, and will finish on Good Friday. The theme of this year's camp is Back to the Future, which reflects our 60th anniversary in 2018, and gives our tamariki a chance to be involved in celebrations the adults will be enjoying later in the year.
The programme is taking shape too, with a variety of speakers lined up on a range of interesting topics, and an off-site activity or two. The camp will wind up with a 50's style sock hop. (Disco's are soooo 1975!)
Official invitations and information will be going out to targeted members and families in a few days via post and/or email, so keep your eye on your inbox!
PS: We'll also be looking for youth volunteers for camp. If you're keen, or know someone who might be, please let your Outreach Worker know.
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Treatment news
 Earlier this month PHARMAC sent out a proposal for the medicines they intend to fund this round.
They propose that from May 1, all people on prophylaxis (or planning to be on prophylaxis) for haemophilia A or B will be transferred to long-acting factor (LAF) products. This reflects HFNZ's position, and is what was recommended. Changing to LAF will be a game-changer for haemophilia B patients, who may now only have to infuse once a week. The Pharmac proposal also equally prioritises haemophilia A & B, which is a win for all of us. It will also mean one less injection a week for haemophilia A.
Meanwhile, the funding of Hemlibra (emicizumab) is being considered. It looks as though it will be approved for inhibitors patients, but any wider application to other haemophilia patients may take longer. A couple of members have access to Hemlibra as a result of the work of HFNZ, treaters, and personal advocacy.
We will be working to ensure that the best, safe, and most effective medications are available to as many of our members as possible.
There will be more info about any changes to treatment out in due course.
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Last weekend the world's premier kapa haka event was help in Wellington, at the Cake-tin. Matatini is held every two years, and brings together the best kapa haka groups from around the country.
This year HFNZ had 11 of our whānau standing at Matatini, which is a fantastic effort!
The big news is that two of our members were in the winning group, Ngā Tūmanako (pictured above). We're very proud to recognise and congratulate Mahia and Makoha Nightingale-Pene. We know that they, and all the other participants, put huge amounts of time, mahi, and aroha into preparing for Matatini. Kei runga noa atu koe!
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Keep your eyes peeled for...
National Family Camp
As mentioned above, the 2019 National Family Camp has been scheduled for April 16 - 19, 2019, at Camp Keswick in Rotorua. That's the first weekend of the April school holidays. As usual, we'll still run a great programme for the whole family.
Register here: event-5531-4a2a.lilregie.com using the password HFNZ.
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HFNZ 60th Anniversary Celebration
Remember that we have a big do planned for HFNZ's 60th anniversary celebration. The main event is on Saturday November 9 2019 at Te Papa, and there is another event being planned for parliament on the 8th.
Official invitations will be going out very soon, but you don't have to wait for that, you can go to hfnz60.lilregie.com to register today.
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Other events in 2019
Remember, we also have several other events on our radar for 2019/20. These include:
- Various group and regional activities around the country
- Youth Camp
- AGM in Rotorua
All of these events are at a very preliminary stage, with no specific plans in place. We'll let you know as more details come to hand.
For any of our events you can contact head office at any time to register your interest.
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