When the founders of the Haemophilia Society first gathered in a dusty town hall in Wellington back in 1958, could they have imagined where the society that is now the Haemophilia Foundation of New Zealand (HFNZ) would be over 60 years later? Your lives, your stories, and your achievements all form part of what HFNZ is today.

Our 60th anniversary celebrations in early November offered a rare opportunity to recognise our achievements and milestones together, reminisce, and reconnect. From the welcome reception at Parliament to the gala dinner at our national museum, Te Papa Tongarewa, these celebrations are now another chapter in our history.

The celebrations may be over, but the mission to improve the lives of all New Zealanders impacted by inherited bleeding disorders continues. In the spirit of these celebrations, please consider a donation to your community by clicking here to contribute to HFNZ’s future.

Thank you for being part of our 60th anniversary celebrations. The celebrations were not only about the past, we also have a bright future ahead.

Remember: alone we can survive; together we will thrive. 

Deon York

President.

Would you like to play a part in highlighting the barriers within the current health system for people living with rare disorders? Complete this survey from Rare Disorders NZ, and share your experiences.

Please click this link to complete the survey.

 

This survey is open to anyone who is living with a rare disorder in NZ, as well as their family members and carers. Your responses will help to provide insight into the unmet treatment needs of people who are living with a rare disorder in this country. 

 

The survey will close on Friday 6 December 2019.

Volume 25 Issue 6 of the WFH Haemophilia journal is out now. Inside you'll find all sorts of interesting academic articles related to bleeding disorders from around the world.

Check out what's in this edition here.

If you're interested in seeing the full text of an article from this edition, contact the office at info@haemophilia.org.nz. We can either email it to you, or arrange for it to be sent to you.

We got out for our last walk of the year on the 24^th of November and were blessed with a fine day and the inclusion of some new members in our group.

We had a relaxed stroll from Elizabeth Park (adjacent to the Dog Park) and just below Victoria Park, up to the Sign of the Kiwi where we indulged ourselves with a cuppa and a scone / muffin. We were amongst the first to be seated at the new macrocarpa outdoor table while we had our “smoko” at our destination.

We are having a break now for a couple of months but look for our newsletters in the New Year, promoting our walks starting from the end of February. Thank you again to all our supporters, including Kathy (nurse) and Lee (physio) who again joined us on our last walk of the year.

Merry Xmas everyone and try and keep your fitness up over the festive season. Hope to see you all in the New Year.

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.

Following the recent changes to funded treatments for haemophilia A and B, we had some feedback that people were unsure about what to expect, and a little anxious about how the changes would affect them. With that in mind we're looking into running a series of one-day workshops in different locations around the country, looking at the psychological impact of changes in treatment regime on people with chronic medical needs. 

Currently, we have a very well-regarded expert lined up to lead the workshops, and we're in discussions around how they will be funded. The workshops are likely to be held in Auckland, Wellington, and Christchurch, probably early in the new year.

While it's early days, and we're still very much in the planning stage, we're at the point where we need to know whether there's a demand for these workshops. They won't go ahead unless people are actually interested in attending.

If this sounds like something you might be interested in please let Sue know by emailing her at ceo@haemophilia.org.nz.

Earlier in the month a group of Southern members got together for a meal and a chat at a local café in Christchurch. This was a very pleasant evening where members were able to socialise and reconnect at the end of a busy year. There was no programme, and no speakers, just HFNZ members sharing stories and enjoying each others' company.

All who attended had a lovely time, and are looking forward to the next one.

A Masters event during the weekend of the 60th anniversary celebrations was requested by an HFNZ member.

In the lead up to the 60th, Outreach contacted those men in the Masters age-range from each region who were attending the 60th to gauge interest. We had eight attend a morning tea on the day, the number we had planned for. Most attendees were from Central, one was from Midlands, and one was from Southern.

It was a low key affair, chatting over coffee/tea and muffins at the Bay Plaza, which was thoroughly enjoyed by all who attended.

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

Youth Camp
July 10 - 12, 2020. 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

As mentioned above, we're also planning a series of workshops in Auckland, Wellington, and Christchurch, where we'll explore issues related to changing treatment. These will only happen if there's a demand for them, so please let us know if that's something that you'd be interested in.

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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