Irish Haemophilia Society eZine: July 16, 2021
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I.H.S. Summer Magazine Out Now!
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Our Summer 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 a nice summer as we begin to, hopefully, emerge from the pandemic with brighter days ahead.

In this issue Brian shares his thoughts on our weeklong focus on von Willebrand Disorder (VWD) for World Haemophilia Day this year, along with a look at Physiotherapy / Exercise Programme.

We take a further look at our VWD activities for World Haemophilia Day 2021 with Shannon Carey who was one of the most recognizable faces across the week.

It is Educational Grants time of the year and you will find all you need to know about the grants and how they can help to alleviate some of the financial burdens of education.

Looking after our mental health is a very important part of our overall health and helps us to manage stress and stay well and similarly, there is never a bad time to discuss mental health. Given we’ve all been doing our best to navigate our way through a pandemic since early last year, we take a look at the vital importance of good mental health as well as a recap of our forthcoming Health & Wellness Programme.

You can read / download the latest issue below – we hope you enjoy reading it!

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Annual Report 2020 | Available Now
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Our Annual Report 2020 is available now with overviews on our activities, events, support and finance, and more from last year.

Member’s should have received a physical copy in the post already but it is also available here digitally.

You can read / download it below:

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Novel Treatments in Haemophilia & other Bleeding Disorders: A Periodic Review
2021 – Issue 1

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.

Read / download it here ([link removed])


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Gene Therapy for Haemophilia A- Update

On June 28, 2021, BioMarin announced that the company resubmitted a Marketing Authorisation Application (MAA) to the European Medicines Agency (EMA) for its investigational gene therapy, valoctocogene roxaparvovec , for adults with severe haemophilia A, under the accelerated assessment process. Accelerated assessment reduces the time frame for the EMA Committee for Medicinal Products for Human Use (CHMP) and Committee for Advanced Therapies (CAT) to review a MAA for an Advanced Therapy Medicinal Product (ATMP). A CHMP opinion is anticipated in the first half of 2022. This is the first Gene Therapy for haemophilia now submitted to the EMA for consideration for licencing.

Data will also be submitted to the Food and Drug Administration ( FDA), the US licencing authority. A submission had previously been made to the FDA who requested re-submission with 2 years data. Biomarin, as requested, will submit 2 year follow up data on all Phase 3 clinical trial participants- some 134 individuals with haemophilia. It is anticipated that this data will be submitted to the FDA by June 2022.

It is reasonable to speculate that we may have a licenced FVIII gene therapy in both the EU and US by the end of 2022.

Additional studies are also ongoing with this gene therapy. One Phase 3 study is looking at the safety of using prophylactic steroids with the gene therapy ( to prevent liver inflammation and possible loss of factor expression). A second study is looking at use in individuals with pre-existing antibodies to the vector (currently pre-existing antibodies to the AAV vector being used to deliver gene therapy is an exclusion criteria for participation in a clinical trial, with the exception of the Uniqure AMT-061 FIX gene therapy trial where pre-existing antibodies are not a barrier to participation). Biomarin are also running a separate study on the use of Gene Therapy in people with active or prior FVIII inhibitors. These last 2 studies are at an earlier phase of development ( Phase 1 / 2 )

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The Irish Times have published a very comprehensive update on the current state of Covid 19 vaccination in Ireland.

This webpage is updated daily as Ireland embarks on the largest inoculation programme in its history.

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Educational Grants 2021
Applications Now Open

We are delighted to announce that applications are now invited for the 2021 Educational Grants.

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.

** Please note, even if you are eligible to apply for more than one grant, you can only apply for one of them.

You can apply online or you can download the application forms below, and post the completed forms into the office; there is more info on the various grants is available here ([link removed]) .

Maureen & Jack Downey Educational Grant: Apply Online ([link removed]) / Download Application Form ([link removed])

Margaret King Educational Grant: Apply Online ([link removed]) / Download Application Form ([link removed])

Father Paddy McGrath Educational Grant: Apply Online ([link removed]) / Download Application Form ([link removed])


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Emicizumab (Hemlibra®) Booklets

The Irish Haemophilia Society is delighted to share two new booklets on Emicizumab (Hemlibra®).

There is one booklet for people with Factor VIII Inhibitors and one for people with Factor VIII deficiency without Inhibitors.

These publications have been produced as an educational tool for members and we hope you find them useful and informative.

The I.H.S. does not engage in medical practice and does not recommend particular treatment for specific individuals. It is strongly recommended that individuals seek the advice of their haemophilia treating clinician and / or consult printed instructions provided by the pharmaceutical company before administering the therapy referred to in this publication. The I.H.S. does not endorse particular treatment products or manufacturers.

You can read / download them here ([link removed]) . If you would like a physical copy, please contact us at 01 657 9900 or [email protected] (mailto:[email protected])


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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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