Irish Haemophilia Society E-zine: June 19, 2020

Irish Haemophilia Society eZine: June 19, 2020
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Update from I.H.S. CEO
June 19, 2020
WFH Virtual Summit

The WFH Virtual summit has been taking place on-line every day since last Sunday and finishes today. This meeting is taking place in lieu of the WFH International Congress which was due to take place this week in Malaysia. I greatly appreciate that registration is free of charge. It has provided an opportunity for people with haemophilia and family members who normally would never have an opportunity to attend a world congress to attend free of charge. I know that several members of the Society in addition to members of the Board and staff have been logging in daily. There have been some very impressive speakers and topics covered.

The Society will be producing a special newsletter supplement after the Summit covering most of the programme. Some of the highlights for me included new data on the ongoing FVIII and FIX Gene Therapy trials, updates on novel technologies leading toward an eventual cure, the session on Low Dose Prophylaxis in developing countries and the overview session on von Willebrands. It was also very encouraging to see Sobi and Sanofi /Genzyme commit to a further donation of 500 million IU of Elocta and Alprolix to the WFH Humanitarian Aid programme which will help thousands of people with haemophilia over the next 5 years. Significant donations were also made by Roche (of Hemlibra) and by Bayer, CSL Behring and Grifols (of clotting factor concentrates).

New Gene Therapy data was presented on the Biomarin FVIII Gene Therapy showing continued factor expression after 4 years with some fall off in the factor level. This Gene Therapy is expected to be licenced in the USA later this year and in Europe in early 2021. New data was also presented on the Uniqure FIX Gene Therapy showing stable expression after 1 year in 3 people in the dose finding study. There were impressive results from low dose prophylaxis regimens in India, Indonesia, China, Tunisia and Thailand. I saw at first hand the benefits of this regime compared to on- demand treatment when I visited Pakistan last year. This is a very productive use of humanitarian aid from WFH.

The Conference also gave updates on von Willebrands and on women with von Willebrands. Ireland is a global leader in the treatment of and research on low von Willebrand levels in women and it was good to see Dr. Michelle Lavin speak at the summit. An excellent 2 hour session on new Novel Therapies gave an update on the wide range of novel approaches being taken to treat haemophilia in the future. This ranged from those in advanced clinical trials such as a new extended half-life FVIII which should allow prophylaxis once a week with a high trough level to updates on other gene therapy clinical trials. It also featured novel approaches including gut implantable spheres which could be used to dispense FVIII, FIX or FVII as required to a non-viral vector based durable and re-dosable Gene Therapy using lipid nano particles in place of an AAV virus vector delivery system. It included advances in Gene Editing which could be applicable to children as well as adults. Our hope is that many, if not
all, of these approaches come to fruition.

This morning, Friday, June 19^th, we hosted an excellent Zoom lecture from Prof. Mike Makris from Sheffield who spoke on Haemophilia Care in the year 2030. He covered developing in therapy, his view of the future of treatment centres and te3lemedicine. It was a very enjoyable Zoom meeting for the 39 participants.

Brian O’Mahony
Chief Executive

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Upcoming Webinars

Continuing with our series of Webinars and Q&A Sessions, we have further meetings coming up on;
Wednesday, June 24 @ 11am: Dental Care: The New Normal with Dr Alison Dougall and Laura Parkinson.

Friday, June 26 @ 11am: Heavy Menstrual Bleeding in Adolescents. Dr. Geraldine Connolly

Monday, June 29 @ 11am: Dental Care and Nose Bleeds in Children with Dr Kirsten Fitzgerald and Dr. John Russell

Wednesday, July 1 @ 2pm: Update from the NCC with Dr Niamh O' Connell, National Director & Consultant Haematologist, NCC

To join us for any of these meeting, please use the link & meeting ID below:

Join Zoom Meeting
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Meeting ID: 905 221 0070

If you plan to join, we would appreciate it if you could drop Barry an email at [email protected] (mailto:[email protected]) to give us an idea of numbers.

FYI: We shall be recording the audio and slides from some Webinars to make them available to those that cannot attend. Please be assured that only audio from speaker's presentations and not Q&As will be recorded. Attendees will not be identifiable on the recordings.

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Exercise & Physical Activity for Children
with Paula Loughnane, Senior Physiotherapist, CHI Crumlin

As part of an ongoing series of webinars hosted by the Irish Haemophiia Society, Paula Loughnane, Senior Physiotherapist at CHI Crumlin discusses 'Exercise and Physical Activity for Children'.

Paula looks at:
* Benefits of Physical Activity
* What is Physical Activity?
* Physical Literacy
* Types of Physical Activity (Intensity, strengthening)
* Recommendations
* Physical Activity in Children in Ireland
* Encouraging Physical Activity

This was recorded on Wednesday, June 3 2020 and we are working on bring other recorded webinar session as soon as possible.

For more info, see haemophilia.ie

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EHC Webinars on Women & Bleeding Disorders

In light of Covid-19, the European Haemophilia Consortium (EHC) had to cancel their 2020 Conference on Women and Bleeding Disorders, however, in its place, the EHC held two very interesting webinars on Women and Bleeding Disorders.

We are delighted to inform you that the video recordings of the webinars on women and bleeding disorders held on May 28 and 29 are available to watch on the EHC YouTube Channel.

To watch the webinar on the management of heavy menstrual bleeding, click here ([link removed])

To watch the webinar on the place of women in comprehensive care, click here ([link removed]) .

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EHC Leadership Conference 2020

Despite the challenges presented by Covid-19, it is important we come together as a community to exchange and engage on shared issues and challenges.

With that in mind, the EHC is organising its Leadership Conference 2020 online this year.

The objective of the EHC Leadership Conference remains the same – to provide time to discuss the issues that matter to you and to benefit from each other’s strengths, experiences and best practices, as well as to still do it so with the usual interactive and engaging elements to the extent possible.

Registration is free and it takes place online over three days - 25, 26, 27 June 2020.

The programme is below and if you are interested in attending, please email [email protected] (mailto:[email protected])

.

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Reminder: NCC Physio Team Survey


The physiotherapy team in the National Coagulation Centre (NCC) in St James's Hospital, is doing a survey of people with severe haemophilia that attend the National Coagluation Centre.

For those of you who have received it, we'd like to ask members to please complete and return the survey.

Your feedback will inform their annual physiotherapy and Haemophilia Joint Health Score (HJHS) assessment service for people with severe haemophilia and the info will help to develop services to better fit the needs and demands of their service users.

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Update from National Coagulation Centre

We have received an update on clinics and consultations from the National Coaguation Centre (NCC) in St James’s Hospital, please see below:

"We would like to thank everyone in the patient community for your continued support and patience during this time of change in the overall delivery of healthcare in Ireland.

While many clinic visits continue to be carried out by telephone or video consultation, sometimes a visit to the NCC in person is needed. If attending the NCC, people are asked to please attend at the time of their appointment only. Space in the NCC waiting area is very limited and social distancing can only be maintained with smaller numbers of people. Where possible, people should attend the NCC on their own. Family members who need to accompany a person attending the NCC may be asked to wait outside of the Centre until the person is ready to be discharged.

We will continue to keep you updated on any changes through the forum.

Our contact numbers are available here. ([link removed]) Please contact us if you have any queries."

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Summer Magazine Gallery

We've all been been finding ways to keep occupied at home recently, a task which was made much more palatable by the fab weather last week!

We'd love to include a photo gallery of what members have been up to for our Summer Mag.

It could be anything from DIY or gardening, BBQs or just chilling, home schooling or online quizzes - whatever you've been up to, we'd love to include some of your photos in our next magazine so, please, send them on to barry@haemophilia

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Events Update

Hardly a surprise given the current situation we find ourselves in but so far we've had to make some changes to our events:

June

Mother & Daughter(s) Overnight

Date: Saturday June 20th & Sunday, June 21st
Venue: Lilliput Adventure Centre

This event has unfortunately been cancelled.

July

Father & Son(s) Overnight

Dates: Saturday July 4th & Sunday, July 5th
Venue: Lilliput Adventure Centre

FYI: This event has unfortunately been cancelled.

Mild Haemophilia & Haemophilia B Information Day

Date: Saturday 18th July

This event will now take place online, via Zoom.

August

Family Day Out

Date: Monday, August 10th
Venue: Dublin Zoo

FYI: This event has unfortunately been cancelled.

Von Willebrand’s Information Day

Date: Saturday, August 29th
Venue: Castleknock Hotel, Dublin

It is currently planned to proceed with this event

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