Irish Haemophilia Society e-Zine: Feb 26, 2021

Irish Haemophilia Society eZine: February 26, 2021
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An Update from I.H.S. CEO

Covid-19 Vaccination and Inherited bleeding disorders

Earlier this week, the HSE announced some changes to the prioritisation criteria for Covid-19 vaccination. It is anticipated that the availability of vaccines in quarter 2 of the year will increase substantially and the plan announced is to provide 1 million doses of vaccine per month from April.

The changes in criteria recognise the clinical challenges faced by some individuals with specific chronic diseases or co-morbidities and whether or not their underlying health condition or conditions place them at higher risk of serious disease from Covid-19 if they become infected.

No changes have been made to the first 3 priority groups: people aged 65 and older in long term care facilities, frontline healthcare workers and people aged over 70. The new 4th priority group are people age 16 to 69 with a medical condition which puts them at very high risk of severe disease and death. Haemophilia or other inherited bleeding disorders do not fit within this category or indeed any specific category. The priority an individual will receive for vaccination will depend on the other underlying conditions an individual may have.

For group 4, this includes a list of conditions with specific parameters for the condition including cancer actively receiving treatment, chronic kidney neurological or respiratory disease who meet certain parameters, uncontrolled diabetes, some immune compromised people including post liver transplant, some inherited metabolic diseases, obesity or sickle cell disease. There are people with haemophilia who have undergone liver transplant who should be in this category.

Group 5 will be people age 65 to 69 whose underlying health condition puts them at high risk of severe disease and death. There are no details on the gov.ie website this morning giving a list of the relevant underlying conditions. Having looked at the list the day it was published to see if it had any relevance to people with inherited bleeding disorders, it did include people with Type 1 or 2 Diabetes, those with HIV or those with liver fibrosis. This should include any of our members between 65 and 69 years old with these conditions. Given the reference to fibrosis, I imagine this will also include any of our members at that age who had been exposed to Hepatitis C in the past. Members with those underlying conditions aged between 16 and 64 will fall into Group 7 and should be in the first cohort of Group 7 to be vaccinated. Members not eligible for vaccination in these groups should fall into Group 12 (all those aged 55-64 years) or Group 14 (aged 18-54 years).

Vaccinations will be delivered via your General Practitioner or vaccination centre. Specific precautions to be taken by people with inherited bleeding disorders when receiving the vaccine have already been published. They are reproduced in this e-Zine and can also be found on the Society website haemophilia.ie.


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Conference & AGM 2021
:: Starts Next Monday :: Still Time To Register ::

Our Conference & AGM 2021 starts next Monday, March 1 and will run over the evenings of March 1 – 4.

We are all very excited and looking forward to seeing you all virtually next week.

Everyone who has registered for our Virtual Conference & AGM will have received a confirmation email or letter with all relevant information, documentation and Zoom log in details.

We have a brand new, purpose built conference website which has all the details on topics/speakers etc. – you can check it out at IHSevents.ie ([link removed])

If you haven't registered yet, there is still time to do so.

Members can return registration forms by mail or register online here ([link removed]) . And for non-members, you can register here ([link removed]) .

You can view the Programme below, click to read in more detail. ([link removed])
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Covid-19 and Vaccination

We have no current information on when and where people with haemophilia and other inherited bleeding disorders will be offered one of the licenced Covid-19 vaccines. Some work has been completed on guidance on giving the vaccine, bearing in mind that these vaccines must be injected by the intramuscular route.

A guidance document for health care workers on vaccination of people with haemophilia, von Willebrands and other inherited bleeding disorders has just been produced by the National Coagulation Centre at St. James’s Hospital.

It is reproduced on our website, please download the PDF ([link removed]) to your phone or device to bring with you to your vaccination appointment.

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Novel Treatments in Haemophilia & other Bleeding Disorders

A Periodic Review | 2020 – 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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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;
* 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)
* Exercise & Health Session from our Virtual October Conference
* 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 Julia 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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