Irish Haemophilia Society E-zine: Dec 4 , 2020

Irish Haemophilia Society eZine: December 4, 2020
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Update From I.H.S. CEO
Annual Conference/AGM

We are delighted to see the rapid progress announced with Covid-19 vaccines. Despite this, it remains uncertain as to when people will be vaccinated and this may not be rolled out widely until early to mid 2021. For this reason, we are of the view that March 2021 remains too soon for us to plan a large in person conference so the Conference/ AGM will take place virtually over 4 evenings from March 1st to 4th. We will be using a Conference backdrop using a Zoom platform.

Registration for the Conference will be required but will be free of charge. Separate registration will be required for the AGM which will be open only to members of the Society.

We have organised an exciting programme of speakers over the 3 evenings of the conference. Sessions will take place from 6pm to 8pm on Monday, March 1st, Tuesday 2nd and Wednesday 3rd. A parallel session on von Willebrands Disorder will take place on the Tuesday. In addition to many eminent speakers from the Haemophilia health care community in Ireland, we are very pleased to have as speakers Dr. Cillian De Gascun head of the National Virus Reference Laboratory who will speak on Covid-19 and vaccines, Prof. Flora Peyvandi from Italy on Novel Therapies and Dr. David Lillicrap from Canada on Gene Therapy. We also expect to have attendees from other European Haemophilia Societies attend, especially on the first evening. We are very excited to host this virtual event and we ask you all to mark the dates in your diary now.

Survey on Electronic Health records

Next week, you will be receiving a mailshot from the Society which will include the latest newsletter and a very short survey on Electronic Health Records. We are conducting a short survey on patient attitudes to and experience of electronic health records in Haemophilia. We would be very grateful if you would complete this very short survey on receipt and return it in the stamped addressed envelope provided with the survey.
Brian O'Mahony
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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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Evaluation of Homescanning App

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 December 20. 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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Christmas Quiz
Thursday, December 17 @ 6PM

We have a Christmas Quiz coming up for members on Thursday, December 17 @ 6PM.

The quiz will be suitable for all the family, with 4 rounds of 10 questions. So, join usto be in with a chance of winning a One4All voucher, and most importantly, bragging rights!

We wholeheartedly encourage the wearing of Christmas jumpers!

If you would like to join us, drop Barry an email at [email protected] (mailto:[email protected]) and let the quiz commence!

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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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Upcoming Webinars in November / December

Continuing with our series of Webinars and Q&A Sessions, we have further meetings coming up on;
Wednesday, December 9 @ 6pm:
'An Update on Clinical Trials in CHI Crumlin'
with Dr Beatrice Nolan
To join us for any of these meeting, please use the link & meeting ID below:

Join Zoom Meeting
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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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The Long Acting Factor 9 (LAF9) study

The Long Acting Factor 9 (LAF9) study is being carried out in the National Coagulation Centre to assess the impact of switching from Benefix to Alprolix treatment for adults with severe haemophilia B. This study is investigating the clinical outcomes and personal experiences of people who switched treatment in 2017.

As part of this study, they are inviting all participants to take part in an optional, individual video interview.

An experienced Clinical Psychologist from the NCC or the Department of Psychology in Trinity College Dublin will talk to you about how switching to Alprolix has impacted on you. The team are interested in your experience, whether it is positive or negative or neutral. The themes to be explored have been developed in conjunction with a patient focus group from the Irish Haemophilia Society.

The interviews will be done by video so you do not have to attend the NCC and can be done at a time convenient to you.

You should receive a detailed information leaflet in the post in the next two weeks and a member of the research team, Dr Mairead O’Donovan, will give you a call to answer any questions you might have regarding this study and to see if you are interested in participating.

You do not have to participate in the interviews if you do not wish to and this will not impact your normal medical care and treatment nor your participation in the rest of the LAF9 study.

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Flu Vaccine for Children

Did you know children aged 2 to 12 can get the nasal flu vaccine for free?

Influenza (flu) is a very infectious illness caused by the flu virus. Flu spreads easily and infects both children and adults.

Children are more likely than adults to get severe complications of flu.

Children who are sick with flu miss days in crèche, childcare and school. They also miss out on their usual activities such as hobbies and sports.

Children aged 2 to 12 can get the nasal flu vaccine for free.

The flu vaccine will help protect your child against flu and reduce the spread of flu to others. For example their brothers and sisters, parents and grandparents.

For further information, please see the HSE website ([link removed]) .
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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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What to Expect when Attending Children’s Health Ireland at Crumlin

During the Covid-19 pandemic arrangements in Children’s Health Ireland at Crumlin have changed somewhat. Below is a brief outline of some changes you can expect to find;

There is a security guard based at all public entrances to the hospital who will ask you the reason for attending.

Only one parent can attend with their child (exceptions may be made for certain circumstances). No brothers and sisters are allowed to attend unless they also have an appointment. Children over 12 must wear a mask when attending CHI at Crumlin.
Social distancing is applied in all waiting areas.

If your child is due to attend the Haematology Department and your child or any family member is presenting with any of the Covid-19 symptoms listed below, you must contact the Department before attending.

Covid-19 Symptoms:
* Fever
* New dry cough
* Shortness of breath
* Loss of sense of smell
* Loss of sense of taste or distortion of sense of taste
* Minor respiratory symptoms especially if you or your child has other ill contacts, is part of an outbreak or is in contact with a proven Covid-19 case

Do not attend the hospital until you have spoken to a member of the Haematology Department.

It is also important to contact the Haematology Department if your child or any family member been outside Ireland in the last 14 days for advice re attending appointments.

We also must remind everyone of the importance of Hand Hygiene upon entrance to and exit from the hospital and any clinical/outpatient area.

If you are attending out Haematology outpatient department for an appointment, please contact (01) 4096913. If attending the Haematology/Oncology Day unit, please contact (01) 4096649

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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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New vWD Info Booklet

The I.H.S. is delighted to announce a new, updated information booklet on von Willebrand Disorder (vWD) and we would like thank Dr Michelle Lavin & Declan Noone for their contribution to this publication.

We hope it will provide readers with a better understanding of vWD and the treatments available and an opportunity to get answers to all those unasked questions.

What is Von Willebrand disorder (vWD) How is vWD inherited? Types of von Willebrand Disorder? What are the symptoms? How is it diagnosed? How is it treated?

You can read / download the digital version here ([link removed]) – if you would like a hard copy / copies, please contact us at [email protected] (mailto:[email protected])

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Parents Handbook

As a parent, when a child is diagnosed with a bleeding disorder, you may feel scared, worried and even guilty. It may be an especially hard time for those with no family history of the condition.

It is important to remember that with good treatment the child with a bleeding disorder has every chance of growing up as an active, fit person who can participate in family, school and later working life. Because bleeding disorders are rare conditions parents may feel isolated and alone and it is very helpful to be put in touch with others in a similar position.

The Society offers support and advice to help improve the quality of life for people with bleeding disorders - and we hope that this publication is a useful, reassuring and helpful resource.

If you would like a physical copy, please contact the office on 01 657 99 00. You can read a digital copy here ([link removed]) .

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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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