Irish Haemophilia Society e-Zine: December 3 2021

Irish Haemophilia Society e-Zine: December 3, 2021
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Covid-19 Update

Boosters &Variants

The rollout of the Covid booster dose continues and we hope that members get an opportunity to receive their booster dose at the earliest possible opportunity. The booster is being rolled out by age with GPs primarily involved in giving the booster to those over age 70 and mass vaccination centres giving the booster to those aged over 60, now also over 50 and for those with certain underlying conditions. Most people receive their booster by appointment but, if you are in the age category for a booster, it is worth checking the HSE website ([link removed]) as some of the mass vaccination centres run a walk in service for some age groups at different times and dates- these tend to be announced on- line either the day prior to the service or several days prior. No specific arrangements have been made for people with haemophilia or other inherited bleeding disorders.

The Omicron variant is, of course now causing concern. It appears that it may be much more transmissible than even the Delta variant but it may result in milder illness. We shall have to wait and see.

If you are receiving your booster, please remember the precautions required for those with an inherited bleeding disorder, please download the PDF ([link removed]) to you phone or device to bring with you to your vaccination appointment.

Covid-19 Seroprevalence in Ireland

A recent publication by the Irish Blood Transfusion service (IBTS) casts light on the early days of the pandemic here. The IBTS looked back at blood samples taken from blood donors from before the pandemic started and in the early days of the pandemic. A total of 8,509 blood donor samples were retrospectively tested for Sars-CoV-2- antibodies. The first positive Covid antibody test was found in a donor sample from February 17^th 2020 - 2 weeks prior to the official start of the pandemic here. The proportion of positive samples was 0.3% in March 2020 rising to 2.9% in April 2020. The proportion of positive samples was higher in Dublin and in those aged under 40 years.

Covid-19 Treatments

Real progress is being made with potential treatments for Covid–19 with drugs from both Pfizer (Paxlovid) and Merck (Lagevrio) now under review from the European Medicines Agency (EMA). Lagevrio can potentially be used within 5 days of first symptoms to treat adults who do not require oxygen and who are in danger of their condition worsening. EMA advised against treatment during pregnancy and for women who plan to or could get pregnant, while adding that breastfeeding must also be stopped around the time of using the pill, which is to be taken twice a day for five days. Pfizer this week applied for US emergency use authorisation of its tablet following data that showed the pill cut the chance of hospitalisation or death by 89 per cent in adults who are at risk of their illness worsening. Merck’s pill, which was approved by the UK earlier this month, has been shown to halve those chances when given early in the illness. Unlike the regulators in the United States, the world’s biggest
pharmaceuticals market, the European Union’s EMA does not have emergency use procedures for treatments or vaccines, and often relies on a lengthier process for authorisation.

But faced with rising Covid-19 cases, the EMA has offered its scientific expertise to nations that may need advice on early-use before any wider recommendations by the regulator. It is worth stressing that these therapies are not yet licenced for use in the EU but they are actively being reviewed.

Novel Products Report

We are currently putting the finishing touches to a new Novel Products Report and will be available in the coming weeks.

This is a very detailed update on all of the novel therapies and pipeline products for the treatment of haemophilia, von Willebrands and rare bleeding disorders. If members do not want to read the entire document, we recommend that you read the sections relevant to your or your child’s bleeding disorder.

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Children’s Health Ireland Virtual Family Forum

Children’s Health Ireland are holding a Virtual Family Forum Meeting on 14 December 2021. This will be the second Family Forum meeting since becoming CHI. The Family Forum aims to showcase of CHI progress, initiatives and an opportunity for discussion with our CHI families.

CHI are inviting parents/guardians/care givers/previous patients (inpatients, outpatients or day case patients) who have had experience attending a CHI hospital (that’s children’s hospitals at Crumlin, Tallaght, Temple Street and/or Connolly Urgent Care Centre) within the past 3 years to register their expressions of interest to attend this meeting.

Families can register their interest by completing this formhere ([link removed]) .
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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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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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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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