Irish Haemophilia Society E-zine: Feb 12, 2021

Irish Haemophilia Society eZine: February 12, 2021
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Conference & AGM 2021

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

Everyone who has registered for our Virtual Conference & AGM will receive a confirmation email or letter on Monday, March 22, with all relevant information, documentation and Zoom log in details.

We have a brand new, purpose built conference website which has all the details on topics/speakers etc. – you can check it out at IHSevents.ie ([link removed])

This event is free to attend but you must register beforehand.

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 Programme below, click to read in more detail. ([link removed])

Looking forward to seeing you all virtually in March!
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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])

** World Federation of Hemophilia ([link removed])

** European Haemophilia Consortium ([link removed])

** Consultative Council on Hepatitis C ([link removed])

** National Haemophilia Council ([link removed])

** Barretstown Camp ([link removed])

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** Health Service Executive ([link removed])

** Irish Health.com ([link removed])

** Citizens Information Bureau ([link removed])
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As a member of the Irish Haemophilia Society you have agreed to be on a mailing list from which you will receive monthly eZines from the IHS.

Our mailing address is:
Irish Haemophilia Society
Cathedral Court
New St,
Dublin 8, Dublin
Ireland

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