Irish Haemophilia Society E-zine: July 3, 2020

Irish Haemophilia Society eZine: July 3, 2020

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Update from I.H.S. CEO
July 3, 2020

The Society organised 8 zoom meetings for members in the month of June. These included some topics which we have had in mind to cover for some time at our meetings or events. One such topic was heavy menstrual bleeding in pre-teenage and teenage girls. This is a significant clinical problem and we were very pleased to have this comprehensively covered by Dr Geraldine Connolly from the Rotunda hospital.

We had updates on the current state of development with and plans for the new National Childrens Hospital from CEO Eilish Hardiman and on the iPATH (Irish Personalised Approach to the Treatment of Haemophilia) research project from Prof. James O Donnell. We had updates on dental care and the changes which have been necessary in the service due to the pandemic from Dr Alison Dougall and Laura Parkinson from the NCC and an update on dental care and nose bleeds from Dr Kirsten Fitzgerald and Dr John Russell from Children’s Health Ireland at Crumlin. Also, from CHI in Crumlin, physiotherapist Paula Loughnane provided a session on exercise and physiotherapy for children, accompanied by some exercise materials now available on our website.

Health economists Jamie O’Hara and Declan Noone gave an update on the health economics of Covid-19 to the staff and Board members by zoom and finally, looking to the future, Prof. Mike Makris from Sheffield, gave us his view of what Haemophilia care will be like in the year 2030. We have had a busy month of zoom meetings. We hope that those of you who joined benefitted from the meetings.

We encourage more of the members to join our zoom calls for the month of July. We will have 7 zoom calls in July. On July 1^st, we started with an update on the National Coagulation centre from Dr. Niamh O’Connell. Planned zoom topics in July include a workshop type call discussing 17 theoretical people with haemophilia and why they would choose certain treatment options with David Page from the Canadian Hemophilia Society, an Update on Gene Therapy and the types of issues which should be considered prior to Gene Therapy with Declan Noone and I both speaking.

We also have two information events on July 18^th which were originally planned as face to face meetings and which will now be zoom calls. These will be on Haemophilia B and on Mild Haemophilia. Speakers will include Dr Beatrice Nolan and Dr Kevin Ryan and we will also hear about the lived experience of haemophilia B and Mild haemophilia respectively from some members. We have started to post the zoom lectures on the website and plan to continue this where appropriate and where speakers agree. Now that home schooling is finished for the summer, we also hope we see more parents able to join the zoom calls.

National Coagulation centre and Telemedicine

Dr O Connell, in her update on July 1^st discussed the impact of telemedicine. The centre has surveyed the impact and it has been seen as very positive by both patients attending the NCC and by the health care staff.

Video or telephone consultations are now in place with the doctors, nurses, physiotherapists, psychologist and dentist. Links can be sent by text or e mail. In a survey carried out by the centre, the experience of video or phone consultations was judged to be positive in improved access, less travel inconvenience, in meeting healthcare needs and in being able to communicate with the health care professional. It was judged to be a straightforward experience requiring less travel inconvenience. People generally found the technology easy to use. 70% of those surveyed felt it was the same as an outpatient clinic with 10% neutral on the question and 20% of the view that it was not as beneficial as an in person out- patient clinic. The health care workers were also surveyed and they were very positive about the initiative.

Interestingly, they were of the view that video consultations were better for communicating with patients. Approximately 70% were of the view that telemedicine was a viable ongoing care option. The only area where telemedicine did not score well was where phlebotomy was required. Obviously, you can not have bloods drawn during a virtual consultation. The experience has been broadly very positive. We are very pleased to see this innovation and we share the view that the future may well be a blended mix of in person visits (perhaps on occasions where bloods are required) and virtual consultations.

Brian O’Mahony
Chief Executive

Educational Grants 2020
Applications Now Open

We are delighted to announce that applications are now invited for the 2020 Educational Grants.

The Society offers educational grants each year to people with haemophilia or related bleeding disorders, and/or their immediate family members who go on to do a post second level educational course.

The purpose of the grant is to offer financial support to students to assist them with the extra expenses involved with their studies.

** Please note, even if you are eligible to apply for more than one grant, you can only apply for one of them.

You can apply online or you can download the application forms below, and post the completed forms into the office; there is more info on the various grants is available here.

Maureen & Jack Downey Educational Grant: Apply Online / Download Application Form

Margaret King Educational Grant: Apply Online / Download Application Form

Father Paddy McGrath Educational Grant: Apply Online / Download Application Form

Upcoming Webinars

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

Wednesday July 8 @ 2pm: Treatment choice in an era of change: Decision process on choosing a new product with David Page, Canadian Hemophilia Society.

Saturday July 18 @ 12-2pm: Haemophilia B Webinar
And
@ 3-5pm: Mild/Moderate Haemophilia Webinar

Wednesday July 22 @ 2pm: Gene Therapy Discussion with Declan Noone & Brian O’Mahony

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

Join Zoom Meeting
https://zoom.us/j/9052210070
Meeting ID: 905 221 0070

If you plan to join, we would appreciate it if you could drop Barry an email at [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.

Watch I.H.S. Webinars on YouTube

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

So far we have uploaded;

Paula Loughnane, Senior Physiotherapist at CHI Crumlin discusses 'Exercise and Physical Activity for Children'.
Dental Care: The New Normal with Alison Dougall and Laura Parkinson
Heavy Menstrual Bleeding in Adolescent Girls with Dr Geraldine Connolly

You can watch them here.

For more info, see haemophilia.ie

Mild & Moderate Haemophilia Webinar :: July 18

The Irish Haemophilia Society are pleased to announce that an information webinar for people with mild and moderate haemophilia will take place on Saturday July 18.

This information webinar will give people an opportunity to gain a better understanding of mild and moderate haemophilia, treatments that are available and to get answers to all those unasked questions.

It takes place via Zoom, 3pm – 5pm on Saturday 18 July 2020, and the programme is below.

To attend this webinar, please contact Robert via [email protected]

Programme:

3pm to 4pm: Mild & Moderate Haemophilia – An update on treatment with Dr. Kevin Ryan, Consultant Haematologist, St. James’s Hospital

4pm to 4.30pm: Living with Mild Haemophilia – A personal perspective with Mr. Brian Byrne, Member of the I.H.S.

4.30pm – 5pm: Questions & Answers.

Haemophilia B Webinar :: July 18

Haemophilia B (or Christmas disease) is a bleeding disorder whereby there is a deficiency of factor IX. With so many new developments in the pipeline, in relation to haemophilia B, we are pleased to inform you that we have organised an information webinar for people with haemophilia B.

Topics will include an update on treatment and developments, novel therapies and gene therapy. We will also have a personal story from a young adult member of the I.H.S.

Education and information is vital and we would therefore encourage as many of you as possible to join us for the excellent webinar.

It takes place via Zoom, 12 Noon – 2pm on Saturday 18 July 2020, and the programme is below.

To attend this webinar, please contact Robert via [email protected]

Programme

12 noon to 1pm – Haemophilia B: A clinical update on treatment – Dr. Beatrice Nolan, Consultant Haematologist, CHI, Crumlin)

1pm to 1.30pm – Living with Haemophilia B – A personal perspective (Member of the I.H.S)

1.30pm to 2pm – Questions & Answers.

Von Willebrand's Disorder (VWD) Information Day 2020

Saturday, August 29 | Castleknock Hotel, Dublin.

The Irish Haemophilia Society are pleased to announce that an information day for people with von Willebrand’s Disorder (VWD) will now take place on Saturday, August 29 in the Castleknock Hotel, Dublin.

This information day will give people an opportunity to gain a better understanding of VWD and the treatments available and an opportunity to get answers to all those unasked questions.

Please note that no charge is applicable on the day but spaces are limited and you must register in advance to attend.

To register online, please click here or if you would like to book in over the phone or would like more information, please contact the office on 01 6579900

Programme:

12:00 - 13:00 Lunch

13:00 - 14:30 von Willebrand’s Disorder – An update
Speaker: Dr. Michelle Lavin

14:30 - 15:30 Living with von Willebrand’s Disorder
Speakers: Mr. Donal McCann & Ms. Shannon Carey

15:30 - 16:00 von Willebrand’s Disorder and the I.H.S.
Speaker: Mr. Brian O’Mahony

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 Our Lady’s Children’s Hospital, 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 Our Lady’s Children’s Hospital, 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.

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

Blood Health 2020

We are delighted to have worked with Health News on their Blood Health campaign once again this year.

A printed publication was enclosed within every copy of the Irish Independent and the content is available online here.

The campaign featured exclusive content from key thought leaders and industry voices about the impact of Covid-19 on haematology patients, malignancies, thrombosis and more

You can read Brian O’Mahony's piece on how the long-cherished hope of seeing gene therapy for haemophilia is now visible on the horizon, here.

#Bloodhealth

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:

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

Connect with Us

LINKS OF INTEREST
Irish Haemophilia Society
World Federation of Hemophilia
European Haemophilia Consortium
Consultative Council on Hepatitis C
National Haemophilia Council
Barretstown Camp
Get Ireland Active
Children in Hospital Ireland
Health Service Executive
Irish Health.com
Citizens Information Bureau

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