Irish Haemophilia Society E-zine: Dec 18, 2020

Irish Haemophilia Society eZine: December 18, 2020
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Merry Christmas from the I.H.S.
The Irish Haemophilia Society office will close for Christmas at 3pm on Wednesday, December 23 2020 & will reopen on Monday, January 4 2021 at 9am.

In the case of an emergency, please call 01 657 9900 where contact details for our emergency contact person will be found.

Wishing you all a very Merry Christmas & a peaceful New Year from the board & staff of the I.H.S

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Gene Therapy Clinical Trial Reports Data – Including 3 Irish Participants

In March of this year, it was announced that the first Irish person with haemophilia had been treated with Gene Therapy for FIX deficiency. A further two people with haemophilia were then treated here in the same clinical trial.

The three are among 54 patients worldwide who participated in the clinical trial for severe haemophilia that started earlier this year. The positive early results of the trial were presented at the prestigious annual meeting of the American Society of Haematology (ASH) on Tuesday.

The Gene Therapy – called Etranacogene Dezaparvovec or AMT-061 uses a more active mutation of the FIX gene called the Padua mutation to give higher FIX expression levels. At the ASH Conference, the Phase 3 clinical trial results were discussed at the point where 6 months post treatment data was available on all 54 people who participated. Of the 54, 98% achieved FIX levels of more than 5%, 83% achieved FIX levels greater than 20%, 68% achieved levels greater than 30% and 38% achieved levels greater than 40% at 6 months post Gene Therapy infusion

The three Irish patients were dosed in February and March this year at the Clinical Research Facility at St James’s Hospital and have been monitored closely since then. All 3 Irish patients have achieved very good levels of FIX expression to date.

One of the three Irish patients is Irish Haemophilia Society CEO Brian O’Mahony, who describes himself as “functionally cured”. Brian was interviewed by RTE & Newstalk, both of which make for very interesting listening, click here ([link removed]) to listen.

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Upcoming Webinars in 2021

Continuing with our series of Webinars and Q&A Sessions, we have further meetings coming up on;

Wednesday, January 13, 2021 @ 6pm:
Coping and resilience during the pandemic
with Dr. Patricia Byrne

Wednesday, January 27, 2021 @ 6pm:
Update on clinical trials in the NCC
with Dr Niamh O’Connell
To join us for any of these meeting, please use the link & meeting ID below:

Join Zoom Meeting
[link removed]
Password: 1968

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 selected 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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Our Winter Mag Is Out Now!

Our Winter Magazine is out now & comes packed with loads of interesting articles from members and staff, news and updates, reports and more.

2020 has been a strange year to say the least and within the magazine we both reflect on this year and look forward to the future. A lot has changed during 2020 but it was another busy year for the I.H.S. with some big announcements and steps toward new and exciting treatments. In the spirit of end of year reflection, that is the theme of Barry's article on the Society's response to the pandemic.

In Brian’s CEO Report he provides details of our forthcoming Virtual AGM in March 2021, along with a look at new treatments and Covid-19 & Vaccines. Later in the issue, Brian also continues to chart the evolution of Haemophilia Care in Europe.

Elsewhere, there is news of educational grants awards for 2020, details of Patient Advocacy Service and we have some insight how haemophilia care has continued during the pandemic with Sheila Roche, Clinical Specialist Physiotherapist in St. James’s Hospital.

Members should have all received your copy in the post but you can read ithere ([link removed]) .

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Hospital Opening Hours for the Christmas Period

As is the season, there will be some changes to hospital opening hours over Christmas. Please see below for details.


** National Coagulation Centre & H&H Assessment Unit – St. James’s Hospital
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Tuesday 22 December 2020 - as normal (8.30am - 5pm)
Wednesday 23 December 2020 - as normal (8.30am - 5pm)
Thursday 24 December 2020 - closed
Friday 25 December 2020 - closed
Saturday 26 December 2020 - closed
Sunday 27 December 2020 - closed
Monday 28 December 2020 - bank holiday service
Tuesday 29 December 2020 - closed
Wednesday 30 December 2020 - closed
Thursday 31 December 2020 - closed
Friday 01 January 2021 - bank holiday service

Normal services from Monday, January 4, 2021

The walk in assessment unit in H&H will operate as per out of hours and weekends with 24 hour cover.

Out of Hours Service Phone: (01) 410 3132 (after 5pm Monday to Friday, and at weekends or bank holidays).

Patients who need emergency assessment or advice should phone the H&H Ward prior to attending, or alternatively contact St. James’s Hospital via the main switchboard on 01 410 3000 and ask for the haematology SHO on call.


** Cork Coagulation Centre - Cork University Hospital
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Tuesday 22 December 2020 - as normal (8am - 5pm)
Wednesday 23 December 2020 - as normal (8am - 4pm)
Thursday 24 December 2020 - closed
Friday 25 December 2020 - closed
Saturday 26 December 2020 - closed
Sunday 27 December 2020 - closed
Monday 28 December 2020 - closed
Tuesday 29 December 2020 - closed
Wednesday 30 December 2020 - closed
Thursday 31 December 2020 - closed
Friday 01 January 2021 - closed

Normal services from Monday, January 4, 2021

The Haematology Registrar is on call throughout the holiday period and can be contacted through the CUH switchboard at
021 454 6400.


** Children’s Health Ireland at Crumlin
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Tuesday 22 December 2020 - as normal (8am - 5pm)
Wednesday 23 December 2020 - as normal (8am- 5pm)
Thursday 24 December 2020 - limited elective activity
Friday 25 December 2020 - closed
Saturday 26 December 2020 - emergencies only
Sunday 27 December 2020 - emergencies only
Monday 28 December 2020 - limited elective activity
Tuesday 29 December 2020 - limited elective activity
Wednesday 30 December 2020 - emergency only
Thursday 31 December 2020 - limited elective activity
Friday 01 January 2021 - closed

Normal services from Monday, January 4, 2021

FYI: The Haematology Oncology Service always remains open but the Haematology Oncology Day Unit & Service only operates Monday - Friday & closes for public holidays.

In the case of an emergency, please contact the hospital on 01 409 6100 and ask for the haematology registrar on call.

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AGM & Conference 2021
The Irish Haemophilia Society is delighted to announce a Virtual AGM & Conference 2021. The conference will take place March 1 - 4.

The event is free to attend but you must register beforehand, and registration will be open in January 2021. More details will be sent to members in the new year.

For now, we are delighted to share provisional programme with you all.

AGM 2021 Virtual Conference – Preliminary Programme
March 1st – 4th
Monday March 1
Theme: Treatment
18.00 – 18.45 Review of Novel Therapies
Speaker: Prof. Flora Peyvandi
18.45 – 19.00 Break
19.00 – 19.45 An Overview of Gene Therapy
Speaker: Dr. David Lillicrap
19.45 – 20.00 Discussion Panel (TBC)

Tuesday March 2
Theme: Comprehensive Care
18.00 – 18.20 Covid-19 and Vaccines
Speaker: Dr. Cillian De Gascun
18.20 – 18.45 The Use of Technology (This session will also include an update on the Lighthouse Project and the Patient Portal.)
Speakers: Mr. Fergal McGroarty, Dr. Niamh O’Connell
18.45 – 19.00 Break
19.00 – 19.20 Dental Care
Speaker: Dr. Alison Dougall
19.20 – 19.40 Resilience and Mental Health
Speaker: Dr. Patricia Byrne
19.40 – 20.00 Targeted Physio at Home
Speakers: Mr. Mark McGowan & Ms. Sheila Roche

Parallel session

Theme: Changing face of treatment in Ireland/von Willebrand’s Disorder
18.45 – 19.30 Update on VWD Guidelines, Treatment and Care
Speaker: Dr. Michelle Lavin
19.30 – 20.00 Living with VWD, a panel discussion
Speakers: Donal McCann & Breda Queally

Wednesday 3rd March
18.00 – 18.30 Update on iPATH
Speaker: Professor James O’Donnell
18.30 – 18.45 Break
18.45 – 19.45 The Changing Face of Treatment in Ireland
Speakers: Dr. Beatrice Nolan, Dr. Niamh O’Connell, Declan Noone and Brian O’Mahony
19.45 – 20.00 Questions and Answers

Thursday 4th March
18.00 – 20.00 Annual General Meeting 2021

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Novel Treatments in Haemophilia & other Bleeding Disorders

A Periodic Review | 2020 – Issue 2

The therapeutic landscape in haemophilia continues to change rapidly and it can be difficult to keep up to date.

The Society has adapted a publication compiled by the European Haemophilia Consortium to produce a comprehensive update on ‘Novel Treatments in Haemophilia & other Bleeding Disorders: A Periodic Review’. It is designed to be informative for both people with bleeding disorders and health care workers.

It is available to read / download here ([link removed]) & for physical copies, please contact the office.

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Reminder: Evaluation of Homescanning App
Deadline: December 20th

The team at the National Coagulation Centre is committed to improving the quality of care for people with bleeding disorders. A questionnaire, designed with input from patient representatives from the Irish Haemophilia Society, has been sent to all who attend the National Coagulation Centre and are on home treatment, to gain insight into peoples’ opinions and experience of the home-scanning App.

The home-scanning App (MPro 5 HX App) was developed to allow people with haemophilia and other bleeding disorders, who are on home treatment with clotting factor replacement or non-factor products, to electronically record the treatments they administer at home.

The NCC team want to understand what you like and do not like about the App, what you know about it and what would make it easier for you to use, whether you currently use it, have used it in the past or have never used it.

We, and the NCC, would greatly appreciate if you could take the time to complete the questionnaire you received, and return it in the enclosed self-addressed envelope (no stamp required) to the National Coagulation Centre, St James’s Hospital, Dublin 8, before [link removed]. The questionnaires are fully anonymous.

If you have any questions regarding the questionnaire, please don’t hesitate to contact either Niamh Larkin (email: [email protected] (mailto:[email protected]) or phone 087-9010301) or Evelyn Singleton (email: [email protected] or phone 01-4103518).

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Travelling or Studying Abroad?

What You Need to Know....

If you are relocating or studying abroad there is a lot to consider before you travel.

Each country has their own rules and regulations that you must follow to ensure you receive equivalent healthcare to what you receive here in Ireland.

Most countries cover emergency / urgent healthcare that is required while a person is visiting, in accordance with your health / travel insurance. However, this usually does not extend to regular haemophilia treatment and does not cover prophylaxis nor regular on demand therapy.

To help, our outreach co-ordinator Robert has designed a handy and informative infographic to outline all you need to know. You can check it out on our website ([link removed]) .

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Watch I.H.S. Webinars On Demand

We've been uploading recordings from our ongoing series of webinars so you catch up on the ones you've missed at your convenience

A sample of what we have uploaded so far;
* An Update on the National Coagulation Centre with Dr Niamh O’Connell (Oct)
* Exercise & Health Session from our Virtual October Conference
* Dental Care: The New Normal with Alison Dougall and Laura Parkinson
* Heavy Menstrual Bleeding in Adolescent Girls with Dr Geraldine Connolly
* Update on New Children’s Hospital with Eilish Hardiman, CEO
* Exercise and Physical Activity for Children with Paula Loughnane, Senior Physiotherapist at CHI Crumlin
* Dental Care and Nose Bleeds in Children with Dr Kirsten Fitzgerald and Dr. John Russell
* Gene Therapy Discussion with I.H.S. CEO Brian O'Mahony & EHC President, Declan Noone
* The Role of the Advanced Nurse Practitioner in Haemophilia with Niamh Larkin, cANP

You can watch them here ([link removed]) .

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Brian O’Mahony Award 2020
For outstanding contribution to haemophilia care in Ireland.
Nominations are now open for the 2020 Brian O’Mahony Award for outstanding contribution to haemophilia care in Ireland.

Nominations can be proposed only by members of the Society. Members of the current board or staff cannot be nominated. If you would like to nominate an individual who, in your opinion, has made a real difference in haemophilia care in Ireland, please send your nomination to:

[email protected] (mailto:[email protected])

The closing date for nominations is January 20, 2021.

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Hyde Square Apartments

Just to remind you all, that the Hyde Square apartments will continue to be available for members and bookings will be taken as normal.
* People with haemophilia or related bleeding disorders from outside of Dublin, when attending St. James’s Hospital or Children’s Health Ireland at Crumlin for treatment, for a hospital appointment or for a review clinic.
* An immediate family member, a spouse, a partner and/or child of the person with haemophilia or related bleeding disorder from outside Dublin, when attending St. James’s Hospital or Children’s Health Ireland at Crumlin for treatment, for a hospital appointment or for a review clinic, or while a family member is an in-patient.

To make a booking, please contact Julia on 01 657 9900*.

For more info, please click here ([link removed]) .

*A nominal fee of €10.00 per booking, per night will be levied to offset the cost of cleaning and routine maintenance.

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LINKS OF INTEREST
** Irish Haemophilia Society ([link removed])

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Copyright © 2016 Irish Haemophilia Society, All rights reserved.
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Dublin 8, Dublin
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