Kuala Lumpur 2020, Inhibitors workshop, GHALS, Farewell to Mary Brasser, HFNZ survey, Bombardier Blood premiere, Upcoming events, and all the Latest News from HFNZ
The latest from the Haemophilia Foundation of New Zealand - January 2020
Do you want to attend the WFH Congress in 2020?
HFNZ National Council are now accepting member applications to be delegates to the 2020 World Congress in Kuala Lumpur.

The purpose of HFNZ delegates attending Congress is:
  • To enhance their individual knowledge
  • To make the knowledge available on their return by writing a full report on sessions attended
  • To speak to gatherings of other members or colleagues
  • To participate in governance, regional activities of HFNZ, or clinical care of people with bleeding disorders.
Here's what WFH say about their congress:

The WFH World Congress is a key event for the WFH and for the global inherited bleeding disorders community. Every second year, doctors, scientists, healthcare workers, people with bleeding disorders and hemophilia organizations gather to learn about the latest developments in bleeding disorders treatment and care. It is during this important meeting that the discussions and debates that will shape our global organization and community take place.

The WFH 2020 World Congress will feature a very rich multidisciplinary program geared towards the needs of patients. Experts will be covering topics such as how technology will revolutionize care, the role caregivers play in the treatment process, health economics, and the voice of women with bleeding disorders.

You can find out more about the 2020 World Congress here.

If you're interested being an HFNZ delegate to this fantastic event you need to put together a written application outlining how you will fulfill the purposes listed above, and send it to CEO Sue Ellis at ceo@haemophilia.org.nz.
 Inhibitors Workshop 2020

The first event of 2020 is the National Inhibitors Workshop. 

The development of an inhibitor, an immune response to treatment with clotting factors, is a risk for people with haemophilia. If an inhibitor develops it significantly changes the life of the individual, and their whānau. Inhibitor Workshops provide specific education for the whole family, and for all ages, on inhibitors and the management of their impact. The workshops help develop a supportive network for people with inhibitors and their whānau, reducing their sense of isolation.

This year's workshop is being held in Auckland at the Quality Hotel Parnell on 13 - 15 March. Invitations will go out soon. If you don't receive an invitation, and you or a member of your family have an inhibitor, please let us know by emailing info@haemophilia.org.nz.

  8th Global Haemophilia Advocacy Leadership Summit

By Sue Ellis

Along with President Deon York, I recently attended the 8th Global Haemophilia Advocacy Leadership Summit in Lisbon, Portugal. This was my second attendance at this annual summit, and this one provided even more interesting presentations and workshops over the two days.

The theme for the summit was Advocacy in Action: Pushing the Access Boundary, and covered how we as advocates can work to improve access to innovation and treatment advances.

There were panel discussions, workshops and presentations from a number of experts.

Senior Medical Officer of the European Medicines Agency Hans-Georg Eichler gave an interesting keynote address looking at identifying decision-maker requirements from patients and discussed what he called, “The evolution of the concept of ‘drug’”.

There was an interesting presentation on Barriers to Access: Patient-Payer Dialogue. Of importance, when we are looking at providing a submission, we must think about what do we need, what is important to us, what are our trade-offs.

Discussions on patient outcomes led into an update on PROBE by Mark Skinner, President/CEO of the Institute for Policy Advancement. PROBE is an online survey that patients with Haemophilia A and B and carriers can access through their smart phone or tablet. The app can be downloaded for free from the Apple Store and Google Play – search for myPROBE, or you can complete the survey at https://plus.macmaster.ca/PROBE. The questionnaire measures key outcomes such as pain, mobility, health impact on work and education, ability to conduct activities of daily living and quality of life. It takes less than 15 minutes to complete.

Amanda Bok, CEO of the European Haemophilia Consortium, presented on working with key decision makers, taking a systems approach perspective. Amanda noted there are different types of personalities. These include the ‘Analytical’ the ‘Driver’ the ‘Expressive’ and the ‘Amiable’. We looked at how we can navigate our approach to these different personalities, and what works the best for each.

Later we spent some time planning an advocacy strategy to help a fictional health organisation which was undergoing change, with workforce and resource issues, education and information requirements. It was organisational change and how we as advocates deal with those issue to ensure our voice and needs continues to be heard.

It was so good to meet up again with fellow advocates from the haemophilia community around the world and to meet new ones. All of us were there to engage with leading advocates, key stakeholders and industry experts, working together to learn new ways of doing things, to cement those and previous lessons that will benefit our haemophilia community.

 Farewell to Mary Brasser
For as long as many of us can remember, Mary Brasser has been a part of our lives as a haemophilia nurse at the Auckland HTC. Well, all good things must come to an end, and Mary has decided that it's time to retire. 

Mary has worked hard for HFNZ members. From dispensing support and advice at clinics, to freely giving her time to lend her expertise at camps and workshops, Mary has always been there for us. She will be missed.

Mary has written a letter to us all:

It’s time to say goodbye.

After 27 years at the Auckland Haemophilia Centre, I am retiring. It’s been a huge decision and I hope the right one.

I have truly loved my job. I have been so lucky to work with the team here who are all fantastic, past and present, and of course getting to know the people with Haemophilia (PWH).  I hope I’ve been able to make life a little easier for them.

I have seen a lot of changes since I started and am so excited about the new treatments being made available and look forward to hearing about that more.

There have of course been highs and lows.

The highs are too many to name. Most stem from attending camps where young boys have learnt to self-treat and to watch them grow into independent young men contributing to society. I love that they bring in partners and their children to meet us. I will miss that interaction.

The significant low being the effects of contaminated blood products. Lovely and brave young men lost their lives due to this and I think of them often. I commend the Haemophilia Foundation for working tirelessly with funders and treaters to get safe and effective treatment for all.

I have also had fabulous opportunities such as going to the Auckland Islands and to attend conferences. I thank those who made this possible. I have met so many people involved with Haemophilia including all the NZ Treaters. They are a special group of people who truly care and are committed to getting the best care possible.

We couldn’t do without the Outreach Workers and we have been lucky to have knowledgeable and caring ones over the years.

Thank you to the PWH in Auckland. It has been a privilege to be your Haemophilia Nurse and I thank you for everything you have taught me. I will miss you all. It will be business as usual here with Karen and Vanessa at the Centre working with Paul, Laura, Nicola, Peter and Lochie. I will pop into camps to say hello and look forward to that.

Kia Koa and nga mea pai katoa

Mary Brasser

Ex Haemophilia Nurse

It's nearly HFNZ survey time
It's nearly that time again, when we reach out to members to find out what your experiences of all things HFNZ have been like.

We haven't run an HFNZ survey since 2018, because there was such a lot of change in 2019. That means we're looking forward to your feedback and what you would like to see in the future.

As you can imagine, there's quite a lot of work to do to get a survey like this together. Right now we're in the design phase, deciding on what we want to know, and how we're going to ask it. We need to make sure we're asking the right things in the right way to get useful information that we can apply to improving our service for our members.

Our aim is to have the survey ready and out to members by the end of March.
Southern walking group: What's up for 2020

Wecome back to 2020. 

This year we're working on being more planned for our walks. That means deciding now what or programme's going to be, so that our walkers can make plans about when they're available. Just like last year, our walks will mostly be on the last Sunday of each month, and we're looking at sticking to the Port Hills tracks we've been using up until now.

1. Sunday 23rd February: Victoria Park to the Sign of the Kiwi, via Harry Ell Walkway. 

Starts from just above the Sign of the Takahe at Elizabeth Park Car park which is opposite Elizabeth Park and the dog exercise paddocks immediately below Victoria Park), sidles gently below Victoria Park and goes up to the Sign of the Kiwi through bush and pine trees up to the Sign of the Kiwi. 1.5 to 2 hrs return.

Here's the list of where we're headed for the rest of the year:


2. Sunday 22 March: Huntsbury Ave Carpark to the Sign of the Kiwi. 1.5 to 2 hrs one way.


3. Sunday 26 April: Taylors Mistake Carpark to Godley Head. 3 hrs approx.


4. Sunday 31 May: Coopers Knob to Cass Peak and Sign of the Bellbird. 2 hrs return approx.


5. Sunday 28 June: Ella’s – Totara Log – Bivvy Track Circuit. 1.5 to 2 hrs return.


6. Sunday 26 July: South Boundary Track Circuit. 1 – 1.5 hrs return.


7. Sunday 30 August: The Tors. 1 - 1.5 hrs return.


8. Sunday 27 September: Mount Cavendish Circuit. 1.5 – 2 hrs return.


9. Sunday 25 October: Captain Thomas & Scarborough Bluffs Circuit. 2 hrs return.


10. Sunday 29 November: Victoria Park to the Sign of the Kiwi, via Harry Ell Walkway. 1.5 to 2 hrs return.


More detail for trips will come out monthly and this information will be repeated in the next Bloodline. A useful resource for these walks is Mark Pickering’s The Port Hills. For about $10 you will find detailed information about these walks. 

In the event that the tracks are too slippery we will take up the free ferry rides available in Lyttleton when they coincide with the last Sunday of the month.

World Haemophilia Day movie premiere
Mountaineer Chris Bombardier has never let haemophilia stop him from climbing some of the world’s tallest mountains. In 2017, Chris partnered with hemophiliac filmmaker Patrick James Lynch to film his journey through Nepal to summit the world’s tallest peak, Mount Everest. On this journey, Chris receives a "wake-up call" about hemophilia in developing countries, where not only is care limited but often hours away.

With breathtaking visuals and powerful insight into bleeding disorder communities overseas, BOMBARDIER BLOOD is an inspiring and heart-warming adventure film that highlights both what is and is not possible when living with this rare disease, depending on a patient's access to medicine and care.

HFNZ will be screening the NZ premiere of Bombardier Blood in Christchurch on World Haemophilia Day, April 17. Final venue and ticketing are still being determined, so watch this space!
Upcoming events
Here's what HFNZ have lined up for members in the coming months:

Inhibitors Weekend
March 13 - 15, 2020 in Auckland at the Quality Inn Parnell

Bombardier Blood Premiere
April 17, 2020. Christchurch in the TSB Space of Tūranga/Chch Public Library

Youth Camp
July 10 - 12, 2020. Auckland. Venue to be advised

Adult Weekened
November 6 - 8, 2020 in Christchurch. Venue to be advised

National Family Camp
April 29 - May 2, 2021 in Kaiapoi at Blue Skies

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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