From Irish Haemophilia Society <[email protected]>
Subject Irish Haemophilia Society e-Zine: Nov 19 2021
Date November 19, 2021 4:53 PM
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Irish Haemophilia Society e-Zine: Nov 19 2021

Irish Haemophilia Society e-Zine: November 19, 2021
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Physiotherapy / Exercise class for women

Earlier this year, we organized 4 pilot physiotherapy/exercise programmes, each of 6 weeks duration. Each class was run on-line by a haemophilia specialist physiotherapist who could effectively tailor the programme to the audience. The pilot programmes were organized and run for men with haemophilia over age 50, men aged 35-50 years, women with bleeding disorders and men and women with von Willebrands Disorder. Following the success of the pilot programmes, we commenced a further series for men with bleeding disorders. This has now completed 7 weeks and it is envisaged that this will run for most of the year on a weekly basis.

A second ongoing class has now commenced for women. This is open to any women with a bleeding disorder – mild, moderate, severe including carriers. It is also open to partners and spouses of men with a bleeding disorder. The classes commenced this past Wednesday, 17 November at 7pm and classes will take place every Wednesday at 7pm for 45 minutes. There remain places available. If you are interested in participating - please e-mail [email protected] (mailto:[email protected]) or contact any of the Society staff.

Planned HIV Memorial

The Department of the Taoiseach has initiated plans for a National HIV Memorial. A memorial oversight committee has been established with the brief to recommend the location and nature of any memorial and oversee the commissioning and design. A number of non-Governmental organisations with an interest in or involvement in HIV are represented on the oversight committee. The Society is represented by the Chief Executive. It is very likely that the site for the memorial will be a public space somewhere in Dublin. We would welcome the views of members, particularly those who were and are impacted by HIV and by family members of those who sadly passed away. If you have any ideas or comments on a potential site for an appropriate Irish HIV memorial or the form it should take, please e-mail your comments to [email protected] (mailto:[email protected]) or call me on 087 2515325
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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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Paula Loughnane Appointed to EAHAD Physiotherapists Committee

We would like to extend our congrats to Paula Loughnane who has been appointed as a co-opted member of the Physiotherapists Committee of the European Association for Haemophilia and Allied Disorders (EAHAD).

We wish her well with the new appointment which will run from February 2022 to February 2023.
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Congrats Jason!

Jason Rossiter has added to his already impressive collection of medals!

Jason was captain of the winning Oulart The Ballagh U15 Premier Division 1 hurling team on Sunday 10 October. Jason and his teammates have won four county titles; two U13s and two U15s premier titles.

In the words of his Mam, not bad going for someone with severe haemophilia

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AGM & Conference 2022
After the success of our October Conference, we very much look forward to seeing the entire community back at our AGM and Conference in the Slieve Russell Hotel, Cavan over the weekend of March 4th - 6th, 2022.

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Dublin Zoo Visit Photos

We were delighted with the uptake of free family passes for Dublin Zoo and we hope all of you who did, have a great time and enjoy your visit.

We would love it if you sent us some photos of your trip so we can include in our e-Zine / magazine, please send them to us at [email protected] (mailto:[email protected])

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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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I.H.S. Autumn Magazine Out Now!

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

We, like you are looking forward to the return of life to some semblance of normality as we head towards the close of 2021.

In this issue, Brian provides an update on the H & H Ward in St. James’s Hospital, an additional Haemophilia Consultant Post for CHI, Crumlin & our October Conference.

Elsewhere, Brian pays tribute to Michael Davenport, former I.H.S. Chair and board member, who passed away in June this year. Michael will be fondly remembered by his family and friends and his many friends in the haemophilia community.

We are eternally grateful to all our volunteers. We could not cater to the needs of our membership without the hard work, generosity, dedication and enthusiasm of our very valuable and vibrant volunteers – and who better to regale tales of volunteering with the I.H.S. than volunteers themselves? Eve and Sam do just that, sharing their volunteering stories.

John Stack provides us with his Chairperson’s update and I.H.S. member Colm Walsh writes about his experience in the 10k Galley Head Swim off Ireland’s South Coast in July.

You can read / download the latest issue here ([link removed]) – we hope you enjoy reading it!

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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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