Irish Haemophilia Society e-Zine: January 14, 2022

Irish Haemophilia Society e-Zine: January 14, 2022
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AGM & Conference 2022

We are delighted to announce that our ‘In Person Annual General Meeting & Conference’ will take place over the weekend of the March 4 – 6, 2022 in the Slieve Russell Hotel in Cavan.

As we were unable to hold our In Person AGM in 2021, we are expecting a lot of interest in this event. We would like to be in a position to accommodate as many members as possible. However, this will depend on public health measures in place, at the time of this event, which will determine what our maximum capacity will be.

If we are unable to hold our in-person AGM & Conference in March, the event will take place virtually on 7th, 8th and 9th March 2022.

The closing date for bookings is Friday, February 4 2022.

If you would like to attend this conference, please completeonline registration form here ([link removed]) . The provisional programmes for adults and young members are on our website ([link removed]) .

We look forward to seeing you all in March.

We will be taking registrations as follows:
* From Wednesday 12th January to Friday 21st January – Registrations will be accepted from adults with a severe bleeding disorder and/or their partner and their children.
* From Monday 24th January to Friday 4th February – Registrations will be accepted from adults with a severe, moderate or mild bleeding disorder, carriers and/or their partner and their children.
* All registrations received will be dated, timed and logged to avoid any misunderstandings.

We are expecting a lot of bookings and we would like to accommodate as many members as possible. However, due to the reduced capacity of the hotel this may not be possible. Therefore, we would encourage you to book in as soon as possible to avoid disappointment.

Please also note the following:
* To ensure the safety of all attendees and all members and also in line with Government Guidelines for indoor gatherings, it will be necessary for each adult attendee to provide evidence of their EU Digital Covid Certificate when booking or in advance of attending this event. To protect ourselves and others, it is necessary that we adhere to all the public health behaviours that keep us and everyone else safe. These will be obvious at the event and will include hand hygiene, physical distancing and face coverings when indoors. The policy for wearing face masks for children at the event will be in line with HSE recommendations in force at the time. Additional government regulations, requirements or guidance which may be in force at the time of the conference will also have to be implemented. Antigen tests will be provided free of charge for members to use on a voluntary basis over the course of the weekend.
* By signing up to attend this conference members must agree to our terms and conditions, as stated on the booking form. Members must also adhere to the hotel COVID-19 protocols for the duration of the conference by wearing face masks, engaging in social distancing and other precautions as required. A copy of hotels COVID-19 policy will be sent to you prior to the conference with your confirmation pack.
* A two-night residential package is the only package available for this conference. We cannot take registrations for one night or as a day delegate.
* As there will be no registration desk or payments desk on the Friday evening of the conference, you must pay in full at the time of registration. All registration documents will be posted or emailed to members two weeks prior to the conference.
* If an adult (aged 18 years or over) who is booked in for the conference does not attend at least two sessions on Saturday and one session on Sunday, they will automatically be charged a full non-member rate at the next conference they attend.
* Children must attend their age-appropriate programme and are not permitted to attend the adult talks. For the safety and welfare of your child/children, it is also essential that at least one parent is onsite and contactable at all times, in the event of an emergency.
* In the event that the conference has to take place virtually, please be reassured that a full refund will be provided.

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Our Winter Magazine Out Now!

Our Winter Magazine is out now and comes packed with lots of interesting articles from members and staff, news and updates, reports and more.

Members should have all received your copy of the magazine in the post but you can read ithere ([link removed]) . We hope you enjoy reading it.
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Novel Treatments in Haemophilia & other Bleeding Disorders 2021 – 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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Brian O’Mahony Award

Nominations are now open for the Brian O’Mahony Award for outstanding contribution to haemophilia care in Ireland.

Nominations can only be proposed by members of the society and members of the current board or staff cannot be nominated.

If you would like to nominate someone who, in your opinion, has made a real difference in haemophilia care in Ireland, please send your nomination to [email protected] (mailto:[email protected])

The deadline for nominations is January 21, 2022.

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EHC Educational App EHCucate goes live

The new educational app from the EHC, EHCucate, has gone live and you can download it to your device from the iOS App Store and Android Google Play.

With the sheer volume of information on rare bleeding disorders and novel therapies, looking for answers can feel overwhelming, complex and confusing!

This is why the EHC has processed years of research and publications from reliable and specialized sources to create EHCucate – an educational and dynamic app tailored to you!

The App provides info in an accessible and engaging way with easy navigation and comes with an extensive glossary of terms.

You can bookmark elements you want to add to your library, improve your knowledge and test your understanding with many quizzes, explore a variety of in-app media, track your progress, check our suggestions for further exploration on your topics of interest.

EHCucate is the ultimate resource repository and educational tool for patients, patient advocates and anybody interested in novel therapies for rare bleeding disorders.

You can now download it on your device from the iOS App Store and Android Google Play.

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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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My Buddy Cormac
Education tool for children with haemophilia & their families

A clever education tool for children with haemophilia and their families has been created through an innovative collaboration involving students from the Creative Media Department of the Munster Technological University, Children’s Health Ireland at Crumlin and the Irish Haemophilia Society.

My Buddy Cormac, an informative and positive awareness animation about haemophilia, focuses on the experience and challenges faced by children with the condition when treatment in hospital is required.

The story is told from the perspective of a child and it delivers an enlightening and creative take on events.

The animation and visual guide, which is aimed at children aged between eight and 12.

You can watch the animated video / read the accompanying guide 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;
* Covid-19: An Update on Vaccines & Side Effects with Prof James O’ Donnell
* Staying Healthy at Home: Physiotherapy and Exercise Groups with Sheila Roche, St. James’s Hospital
* An Update on the National Coagulation Centre with Dr Niamh O’Connell (Oct)
* Dental Care: The New Normal with Alison Dougall and Laura Parkinson
* Heavy Menstrual Bleeding in Adolescent Girls with Dr Geraldine Connolly
* 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 us 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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Irish Haemophilia Society
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