Irish Haemophilia Society e-Zine: March 11, 2022

Irish Haemophilia Society e-Zine: March 11, 2022
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An Update from I.H.S. Chief Executive

Ukraine and refugees
The appalling tragedy which has overcome the people in Ukraine will be familiar to all at this point. As an EU member state, Ireland is committed to taking in our share of refugees from Ukraine. As we have 2% of the EU population, we will be expected to take in 2% of the refugees who make their way to the EU. This may be somewhere between 40,000 and 160,000 people. As of today, almost 3,000 refugees from Ukraine had already arrived in Ireland and been granted sanctuary.

I have been in contact by e-mail in the past two weeks with our counterpart haemophilia societies in Poland, Hungary, Romania and Slovakia, and by phone with Poland. They are now coming under extreme pressure as the number of refugees there grows daily. Poland has now taken in well in excess of 1 million refugees. We have offered assistance to these organisations but, at present, their main need is to help the refugees find homes.

The Irish Red Cross at www.redcross.ie have set up a register of people who would be willing to assist by pledging accommodation. They are asking people to consider pledging a spare room or vacant property for a period of 12 to 18 months. They provide full support throughout this process.

We would be very grateful if members of our community would pledge accommodation where available. We will be liaising with the Irish Red Cross and HSE to let us know if any families with haemophilia from Ukraine are coming to Ireland or arrive in Ireland. The ideal scenario would be where these families could be placed with Irish families with haemophilia. In this situation, the Irish and Ukrainian families could also count on additional support from the Irish Haemophilia Society.

The Society’s accommodation facility at Hyde square in Dublin will be made available as a short term facility (up to 2 week) and will then also be available as an overnight facility for these and Irish families when the person with haemophilia has to attend either St. James’s Hospital or CHI at Crumlin.

If you are interested in pledging accommodation or if you want to discuss this, please contact Robert Flanagan on 087 7610511 or [email protected] (mailto:[email protected])

On a separate note, the Irish Government had, prior to the invasion of Ukraine, agreed to bring a certain number of Syrian people who are currently refugees in Jordan and Lebanon into Ireland. As part of this initiative, three families who each have a child with haemophilia will be arriving into the country. We are not seeking accommodation pledges for these families as this is being organised with the HSE but we will be providing help and support to these families.
Annual Conference and AGM
It was a great pleasure to see 160 members, volunteers and guests at our Annual Conference in the Slieve Russell hotel in Cavan last weekend. The programme of lectures was great with excellent lectures on Gene Therapy, Novel Therapies, Physiotherapy, Experience with Emicizumab in Ireland, and an Open Forum discussion. The attendance at all the sessions was high, the questions were numerous and the answers informative. It was great to see all the volunteers working again and many remarked on how all the children had grown in the past two years. Socially, it was lovely to see people sitting together, enjoying a meal and catching up with old friends or making new friends.
Brian O’Mahony,
Chief Executive

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VHI Women’s Mini Marathon
Registration Open Now

Entries are now open for the VHI Women’s Mini Marathon 2022, which will be taking place in Dublin City on Bank Holiday Sunday 5th June.

In 1983, 9,000 incredible women entered Ireland’s first Women’s Mini Marathon in Dublin. In 2022, to celebrate its 40th magical year, WMM will stand for Women Making Magic!

Now one of the largest women’s event in the world of its kind. Over €225 million has been raised for charities, not to mention the hearts, souls and spirits raised every single step of the way. This special year, lets recognise and celebrate their magic.

We are very grateful to all the ladies who take part in the Mini Marathon for the I.H.S. every year, your support for the work of the Society is really appreciated. An event like this is so important, not only to raise funds but to raise awareness of haemophilia and other bleeding disorders.

So, if you have a bleeding disorder or if you are the mother, sister, daughter, niece, cousin or friend of an adult or child living with a bleeding disorder, now is your chance to show your support by taking part in this year’s VHI Women’s Mini Marathon to raise funds for the I.H.S.

For more info on VHI Women’s Mini Marathon or to register, please visit vhiwomensminimarathon.ie ([link removed]) .

If you would like to raise funds in aid of the I.H.S. or you would like more info about fundraising, please contact Nina in the office on 01 6579900 or email [email protected] (mailto:[email protected]) .

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EHC Conference on Women & Bleeding Disorders

The EHC will be hosting the second Conference on Women and Bleeding Disorders on May 20 - 22 in Basel, Switzerland.

The deadline for registrations is Sunday 13 March.

You can now consult the programme and register via www.ehc.eu ([link removed])

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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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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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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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LINKS OF INTEREST
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