Irish Haemophilia Society E-zine: June 12, 2020

Irish Haemophilia Society eZine: June 12, 2020
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Update from I.H.S. CEO
June 12, 2020
Zoom Update meetings

We have a varied menu of zoom meetings for members to join for the remainder of this month. On Monday next, June 15th, we have the Chief Executive of Children’s Hospital Ireland, Eilish Hardiman giving an update on progress with the new National Children’s Hospital. On June 19th, Prof. Mike Makris from Sheffield, a former President of the European Association for Haemophilia and Allied Disorders, former editor of the journal Haemophilia and current Chair of the EHC Medical Advisory Board will give us his views on Haemophilia Treatment and Care in the year 2030. On June 24th, Dr Alison Dougall and Laura Parkinson will present on Dental Care - the New Normal. On June 26th, Dr Geraldine Connolly will present on heavy menstrual bleeding in adolescent girls. On June 29th, Dr Kirsten Fitzgerald and Dr John Russell from CHI in Crumlin will present on Dental Care and Nosebleeds in Children and on July 1st, Dr Niamh O'Connell will give an update on the National Coagulation Centre.

NCC and Orthopaedic Surgery

We are aware that several members are awaiting orthopaedic surgery. Given the Covid-19 pandemic, elective surgeries have been postponed for the past number of months. A backlog of people with haemophilia who require orthopaedic surgery now exists. There remains an understandable reluctance to carry out any major procedures at present due to the risk of an individual possibly being infected with Covid-19 while in hospital. The Society are fully aware of the frustration that people who are waiting are feeling. We have been in contact with the NCC and we will work with the NCC and the National Haemophilia Council to try to make progress in this area as expeditiously as possible.

Twinning Programme with Jordan

This past week, we continued our series of webinars with our twinned organisation in Jordan - the Jordan Thalassemia and Haemophilia Society. This week, the webinar focused on Governance issues following our last webinar on publications and newsletters. Future planned webinars include events and membership and strategic planning. The webinars have been well attended by volunteers and board members from Jordan. This method of communication does not entirely replace face to face meetings but for specific work programmes and topics, it is surprisingly effective.

WFH Virtual Summit

The WFH International Congress will now take place virtually from this coming Sunday, June 14th until Friday, June 19th inclusive. The Conference will run from 1pm to 6pm Irish time each day. Registration is free of charge and details on how to register are contained later in this E-zine. We recommend this to members as you will have an opportunity to hear excellent speakers on many diverse topics related to bleeding disorders.

The updated and detailed programme for the summit can be viewed here ([link removed])

The registration form can be accessed here ([link removed])

DARE College access

The Disability Route to Education (DARE) Scheme is a third level alternative admissions scheme for school leavers whose disability have had a negative impact on their second level education. This scheme can be of assistance to people with haemophilia or other inherited bleeding disorders in terms of getting access to your course of choice and assistance with logistics and practicalities of going to college. If you are applying for college this year and you would like further information, contact Robert Flanagan at the Society ([email protected] (mailto:[email protected]) ) or Social worker Gloria Rooney at the NCC ([email protected] (mailto:[email protected]) )

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;
Monday, June 15th @ 1pm: Update on New Children’s Hospital with Eilish Hardiman, CEO (Rescheduled Due to technical difficulties)

Friday, June 19 @ 11am: Haemophilia Care in the year 2030 with Prof. Mike Makris, Director of the Sheffield Haemophilia and Thrombosis Centre

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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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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WFH Virtual Summit

Following cancellation of the WFH International Congress due to Covid-19, WFH have organised a virtual conference. It takes place June 14 to June 19 & registration is FREE

The detailed programme for the summit can be viewed here ([link removed]) . If you wish to see details of the topics in each symposium, click on the small cc icon at the right hand side.

Society CEO Brian O'Mahony will be speaking at the session at 12.40 to 1.40pm (5.40pm to 6.40pm Irish time) on Tuesday, June 16 in the Symposium: Treatment choice in an era of change. Brian’s topic will be: Gene Therapy – Fears, Expectations and Decision Drivers.

Also, Dr. Niamh O'Connell from the NCC will be speaking on Thursday, June 18 between 9 - 10 (2-3 Irish time) as part of the 'Connecting the global community through partnerships - WFH Twinning Program' session.

The registration form can be accessed here ([link removed])
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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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