Irish Haemophilia Society E-zine: March 12, 2021

Irish Haemophilia Society eZine: March 12, 2021
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An Update from I.H.S. CEO

Conference & AGM

Our annual conference last week was held over the course of 3 evenings. We decided that a 2 hour zoom meeting each evening was long enough. We also decided to go with the zoom platform as many members, who have attended some of our 50 zoom webinars in the past year would be familiar with the platform. We added a standard backdrop for the staff and board members, advertisements for some of our activities and background music.

A total of 198 people registered for the Conference. Attendance was very good for an on-line event with 107 attending on Monday, 106 on Tuesday and 85 on Wednesday. Attendees were a mix of members of the Society, representatives from pharmaceutical companies and a large number of attendees from abroad. We were very pleased to open registration to people with haemophilia from other countries.

The virtual nature of the conference also allowed us to invite speakers from abroad without the requirement for them to travel long distances. We had excellent updates on Novel Therapies and on Gene Therapy from Prof. Flora Peyvandi from Italy and Prof. David Lillicrap from Canada respectively on the Monday evening.

Tuesday began with a very comprehensive look at Covid-19 and vaccines from Dr. Cillian de Gascun, Director of the National Virus Reference Laboratory and a key member of NPHET. This was followed by updates on the Use of Technology including the Lighthouse project and Patient Portal from Dr. Niamh O'Connell and Feargal Mc Groarty, an Update on Dental Care from Dr. Alison Dougall and Targeted Physiotherapy at home from Mark McGowan - all from the team at the NCC at St. James’s Hospital.

We ran a parallel track on Tuesday on von Willebrands disorder with a comprehensive look at the new VWD Guidelines from Dr. Michelle Lavin from the NCC followed by a discussion on their personal experience of living with VWD from Breda Queally and Donal Mc Cann. Wednesday began with an update on the innovative iPATH research programme from Prof. James O Donnell from NCC, followed by a talk on Resilience and Mental Health from Dr. Patricia Byrne from the NCC. This was followed by a panel discussion between Dr. Niamh O Connell, Dr. Beatrice Nolan from CHI, Crumlin, Declan Noone, President of the EHC and I. We discussed the future direction of treatment, haemophilia comprehensive care, treatment for vWD and patient engagement.

We were very gratified by the number and quality of questions submitted during the conference. After the 2 hour session each evening, we opened a separate networking room which gave members and speakers an opportunity to chat and communicate in a less formal manner.

The Annual General Meeting of the Society then took place by Zoom on the Thursday evening with a total attendance of 53 people. All of the lectures from the Conference have now been posted on our website (with the exception of the lecture on iPATH which contained a significant amount of as yet unpublished information). We hope that those who attended enjoyed the event and for those who were unable to attend, you can watch the lectures at your leisure on haemophilia.ie.

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Extended Half Life Factor IX

A National Procurement process for Extended Half Life Factor IX concentrate has just been completed by the Haemophilia Product Selection and Monitoring Advisory Board (HPSMAB).

The Society are represented on this Board by Declan Noone and Brian O Mahony who is the Vice-Chair of the Board. The contract to be awarded is for a two year term with possible extensions for a third or fourth year at the discretion of the HPSMAB.

The results of the procurement process are announced below in the letter from Dr. Niamh O Connell, Chair of the HPSMAB and Brian O Mahony, Vice-Chair.

Full view here ([link removed])

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Conference & AGM 2021
:: Watch Sessions on Demand ::

Our Conference & AGM 2021 took place virtually this year, with sessions taking place over the evenings of March 1 – 4.

We are very pleased with how the conference went and are thrilled that so many of you could make it. We hope all of you who attended enjoyed the conference and found the sessions informative, engaging and thought provoking.

We are uploading the sessions throughout this week (permission permitting) from conference to the website so you can watch them at your ease, when time allows.

You can watch them on our website from today. Click here to check them out ([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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EHC Presents New Educational App 'EHCucate'

The EHC are developing a new educational app on rare bleeding disorders and novel therapies: ‘EHCucate.’ This app will be freely available on both Android and iOS smartphones & tablets.

Learn more on EHCucate in this short video here ([link removed]) .

The EHC is currently calling on the patient community (patients, healthcare providers, care-givers etc.) for testers of its beta version. All of those interested in providing feedback and further developing this educational tool should register their interest here ([link removed])

For further info on EHCucate, please get in touch with Nastassia on the EHC team (mailto:[email protected]) .

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Conference Playlist

We had a number of queries and compliments about the music used during our Virtual Conference 2021, so with that in mind, we put all the tunes together in a Spotify playlist.

We hope you enjoy!

Tune in here ([link removed])
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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 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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