Update 2020

CEO Update | 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 programme for the summit can be viewed here*

The registration form can be accessed here

*(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 in the Symposium: Treatment choice in an era of change. Brian’s topic will be: Gene Therapy – Fears, Expectations and Decision Drivers)

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 (robert@haemophilia.ie) or Social worker Gloria Rooney at the NCC (grooney@stjames.ie)

Brian O’Mahony