Irish Haemophilia Society e-Zine: Jan 29, 2021

Irish Haemophilia Society eZine: January 29, 2021
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An Update from I.H.S. CEO
January 29, 2021

As we near the end of the long month of January and face into at least another six weeks of level 5 lockdown, it is time perhaps to reflect on the past year.

We are in the midst of a pandemic which has altered our way of life, our ability to work together, interact, meet, socialise and carry on all the activities we had always associated with normal life.

Since March of 2020, the Society have responded by pivoting from in-person events to virtual zoom webinars and meetings. Our output of publications has been not only maintained, but we have added regular e-Zines and a significantly expanded electronic mailing list. In our recent survey of members, many of you now express a preference for receiving our information electronically. We shall, of course, continue to produce hard copies of many publications in addition to having all our publications available on the website in a downloadable and easily readable format.

In a pandemic or probably post pandemic world, the flow of new information is and will remain faster. The requirement to get information out to people more rapidly is a growing imperative. Changes in practice, infrastructure or clinic arrangements at the Haemophilia Treatment Centres or advice on vaccination protocols for people with inherited bleeding disorders are examples where you need the information more rapidly than dissemination via a quarterly newsletter / magazine will allow. We encourage all members to provide us with an updated e-mail address and subscribe to our electronic e-Zine (people can sign-up via haemophilia.ie / MailChimp ([link removed]) or send an email to [email protected] (mailto:[email protected]) )

The impact of the pandemic first started to impinge on our work on the first weekend of March 2020 at our Annual Conference and AGM in Cavan. Several of our planned speakers from the treatment centres were unable to travel to Cavan at the last minute due to clinical restrictions. Fortunately, we were able to proceed with all planned lectures by having the speakers join the meeting by Zoom. This turned out to be a precursor for the next year where Zoom webinars and virtual meetings have become a mainstay of our communication and education work.

Approaching one year later, you will see details in this e-Zine of the programme for our Annual Conference and AGM on the first week in March this year. The conference will take place on three consecutive evenings on March 1, 2 and 3 and will be followed by the AGM for members on March 4^th.

We have put together an exciting and diverse programme featuring guest speakers from the Haemophilia centres in Ireland, Dr. Cillian De Gascun from NPHET and 2 eminent guest lecturers from Italy and Canada respectively. Dr. De Gascun will provide an update on Covid-19 vaccination progress. Prof. Flora Peyvandi from Italy will provide an update on Novel Therapies for Haemophilia and other bleeding disorders and Dr. David Lillicrap from Canada will provide an update on Gene Therapy progress in Haemophilia.

Registration for the Conference is free of charge. We have set up an events website (www.ihsevents.ie) to allow for rapid and simple registration. We hope to be joined by many members and indeed guest attendees from abroad for this first ever I.H.S. virtual annual conference.

The timing is fortuitous - these will be, hopefully, the last 4 days before we emerge from the cocoon of Level 5 lockdown on March 5th. What better way to emerge back into the light of day and relative freedom that to be fortified with new and updated knowledge assured of the continued sense of community and resilience we both foster and share.

Brian O'Mahony

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AGM & Conference 2021

Our AGM & Conference 2021 will take place virtually this year, over the evenings of March 1 – 4.

AGM packs have gone out to members via An Post and if you would like to attend this conference, we would encourage you to register as soon as possible to avoid missing out.

We have a brand new, purpose built conference website which has all the information and details you will need – you can check it out at IHSevents.ie ([link removed])

This event is free to attend but you must register beforehand. The closing date for registrations is Friday, February 12.

Members can return registration forms by mail or register online here ([link removed]) . And for non-members, you can register here ([link removed]) .

You can view the Adult Programme below, click to read in more detail ([link removed]) .

Looking forward to seeing you all virtually in March!
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I.H.S. Bookclub
Deadline: Monday Feb 1st
We are gauging the level of interest in participating in a Society Book Club. If you are interested, please e mail [email protected] (mailto:[email protected]) by Monday, February 1.

If there is sufficient interest, we will then circulate a list of 4 possible fiction books for interested members to choose one and hold a Book Club meeting to discuss the chosen book on February 16 at 6.30pm.

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Upcoming Webinars

Continuing with our series of Webinars, we have further meetings coming up on;

Wednesday, February 17, 2021 @ 6pm:
Staying Healthy at Home: Physiotherapy and Exercise Groups
with Sheila Roche, St. James's Hospital

Wednesday, February 24, 2021 @ 6pm:
Financial Advice
with Pat Stagg, Citizens Information Centre & Robert Flanagan, I.H.S. Outreach Co-ordinator

To join us for any of this 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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Covid-19 and Vaccination

We have no current information on when and where people with haemophilia and other inherited bleeding disorders will be offered one of the licenced Covid-19 vaccines. Some work has been completed on guidance on giving the vaccine, bearing in mind that these vaccines must be injected by the intramuscular route.

A guidance document for health care workers on vaccination of people with haemophilia, von Willebrands and other inherited bleeding disorders has just been produced by the National Coagulation Centre at St. James’s Hospital.

It is reproduced on our website, please download the PDF ([link removed]) to your phone or device to bring with you to your vaccination appointment.

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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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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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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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