Irish Haemophilia Society e-Zine: August 27, 2021

Irish Haemophilia Society e-Zine: August 27, 2021
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October Members Conference 2021

Our October Members Conference will take place over the weekend of October 15 to 17 2021 in Mount Wolseley Hotel in Co Carlow. The conference this year will be open to adults only.

As we have been unable to hold an in-person event since our AGM in 2020, 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 may not be possible and will depend on public health guidelines at the time of this event. Our maximum capacity will either be 50 delegates in total or 100 delegates in total.

We therefore must take registrations as follows:
* From Monday August 16th to Sunday August 22nd – Registrations will be accepted only from adults with a severe bleeding disorder and their partner.
* From Monday August 23rd to Friday 17th September – Registrations will be accepted from adults with a severe, moderate or mild bleeding disorder, carriers and their partner.
* All registrations received will be dated, timed and logged to avoid any misunderstandings.

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 attendee to provide evidence of their EU Digital Covid Certificate or HSE Vaccination Card on registration 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, face coverings when indoors. If you are awaiting vaccination at time of registration, you may register to hold a place if available, but you will have to confirm you have been fully vaccinated and supply a copy of your EU Digital Covid Vaccination Certificate to the Society prior to the conference.
* By signing up to attend this conference members must agree to our terms and conditions, as stated on the registration 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. You will find a copy of the hotels COVID-19 policy in this pack.
* You must pay in full at the time of registration.
* 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.
* There will be no registration desk on the Friday evening. All registration documents will be posted or emailed to members two weeks prior to the conference.

THE CLOSING DATE FOR BOOKINGS IS FRIDAY 17TH SEPTEMBER 2021. If you would like to attend, we would advise registering as soon as possible as places may be strictly limited

Confirmation letters and registration packs will be sent out to everyone who has registered two weeks prior to the conference, as per your preference ticked on the registration form.

We look forward to seeing you all in October.

To book your place online, please click here ([link removed]) .

To download the registration form, please click here ([link removed]) .

The preliminary programme is available to view here ([link removed]) too.
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2021 Educational Grants

Our 2021 Grants Application process is open!

The Society offers educational grants each year to people with haemophilia or related bleeding disorders, and/or their immediate family members who go on to do a post second level educational course.

The purpose of the grant is to offer financial support to students to assist them with the extra expenses involved with their studies.

For more info and links to apply, please click here ([link removed]) .
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Advocating for better care for people with VWD

The World Federation of Hemophilia has a webinar on the topic of 'Advocating for better care for people with VWD' on September 1.

This informative webinar explain about the ASH ISTH NHF WFH 2021 Guidelines on the Diagnosis and Management of von Willebrand Disease (VWD) as well as how to advocate for better care for people with VWD. Participants will have the opportunity to ask questions during a live Q&A period. Questions can be submitted in advance below or during the webinar using the Q&A option on-screen.

The webinar takes place at 13:00 GMT - to register for this event, please click here ([link removed]) .

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Upcoming Webinars

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

Wednesday, September 29 @ 6pm:
Clinical Trials at the NCC in 2022
with Dr Niamh O Connell
(Dr O Connell will also provide a brief update on services from the NCC)

To join us for 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] ([link removed]) 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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I.H.S. Summer Mag!

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

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

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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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2021 VHI VIRTUAL WOMEN'S MINI MARATHON
REGISTRATION IS NOW OPEN

This year's Women's Mini Marathon will be a virtual event and will take place on Sunday 19th September. You can race the real route of the VHI Women's Mini Marathon in Dublin City from your doorstep, anywhere in the WORLD using a brand new event App

Sign up today and run, walk or jog the Virtual Vhi Women's Mini Marathon, and receive an exclusive finishers t-shirt and a 2021 commemorative medal.

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 Virtual Women’s Mini Marathon to raise funds for the I.H.S.

Visit vhiwomensminimarathon.ie ([link removed]) to register online.

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

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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
** Irish Haemophilia Society ([link removed])

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Irish Haemophilia Society
Cathedral Court
New St,
Dublin 8, Dublin
Ireland

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