| From | Irish Haemophilia Society <[email protected]> |
| Subject | Irish Haemophilia Society E-zine: July 3, 2020 |
| Date | July 3, 2020 2:58 PM |
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Irish Haemophilia Society E-zine: July 3, 2020
Irish Haemophilia Society eZine: July 3, 2020
View this email in your browser ([link removed])
[link removed]
Update from I.H.S. CEO
July 3, 2020
The Society organised 8 zoom meetings for members in the month of June. These included some topics which we have had in mind to cover for some time at our meetings or events. One such topic was heavy menstrual bleeding in pre-teenage and teenage girls. This is a significant clinical problem and we were very pleased to have this comprehensively covered by Dr Geraldine Connolly from the Rotunda hospital.
We had updates on the current state of development with and plans for the new National Childrens Hospital from CEO Eilish Hardiman and on the iPATH (Irish Personalised Approach to the Treatment of Haemophilia) research project from Prof. James O Donnell. We had updates on dental care and the changes which have been necessary in the service due to the pandemic from Dr Alison Dougall and Laura Parkinson from the NCC and an update on dental care and nose bleeds from Dr Kirsten Fitzgerald and Dr John Russell from Children’s Health Ireland at Crumlin. Also, from CHI in Crumlin, physiotherapist Paula Loughnane provided a session on exercise and physiotherapy for children, accompanied by some exercise materials now available on our website.
Health economists Jamie O’Hara and Declan Noone gave an update on the health economics of Covid-19 to the staff and Board members by zoom and finally, looking to the future, Prof. Mike Makris from Sheffield, gave us his view of what Haemophilia care will be like in the year 2030. We have had a busy month of zoom meetings. We hope that those of you who joined benefitted from the meetings.
We encourage more of the members to join our zoom calls for the month of July. We will have 7 zoom calls in July. On July 1^st, we started with an update on the National Coagulation centre from Dr. Niamh O’Connell. Planned zoom topics in July include a workshop type call discussing 17 theoretical people with haemophilia and why they would choose certain treatment options with David Page from the Canadian Hemophilia Society, an Update on Gene Therapy and the types of issues which should be considered prior to Gene Therapy with Declan Noone and I both speaking.
We also have two information events on July 18^th which were originally planned as face to face meetings and which will now be zoom calls. These will be on Haemophilia B and on Mild Haemophilia. Speakers will include Dr Beatrice Nolan and Dr Kevin Ryan and we will also hear about the lived experience of haemophilia B and Mild haemophilia respectively from some members. We have started to post the zoom lectures on the website and plan to continue this where appropriate and where speakers agree. Now that home schooling is finished for the summer, we also hope we see more parents able to join the zoom calls.
National Coagulation centre and Telemedicine
Dr O Connell, in her update on July 1^st discussed the impact of telemedicine. The centre has surveyed the impact and it has been seen as very positive by both patients attending the NCC and by the health care staff.
Video or telephone consultations are now in place with the doctors, nurses, physiotherapists, psychologist and dentist. Links can be sent by text or e mail. In a survey carried out by the centre, the experience of video or phone consultations was judged to be positive in improved access, less travel inconvenience, in meeting healthcare needs and in being able to communicate with the health care professional. It was judged to be a straightforward experience requiring less travel inconvenience. People generally found the technology easy to use. 70% of those surveyed felt it was the same as an outpatient clinic with 10% neutral on the question and 20% of the view that it was not as beneficial as an in person out- patient clinic. The health care workers were also surveyed and they were very positive about the initiative.
Interestingly, they were of the view that video consultations were better for communicating with patients. Approximately 70% were of the view that telemedicine was a viable ongoing care option. The only area where telemedicine did not score well was where phlebotomy was required. Obviously, you can not have bloods drawn during a virtual consultation. The experience has been broadly very positive. We are very pleased to see this innovation and we share the view that the future may well be a blended mix of in person visits (perhaps on occasions where bloods are required) and virtual consultations.
Brian O’Mahony
Chief Executive
[link removed]
Educational Grants 2020
Applications Now Open
We are delighted to announce that applications are now invited for the 2020 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])
[link removed]
Upcoming Webinars
Continuing with our series of Webinars and Q&A Sessions, we have further meetings coming up on;
Wednesday July 8 @ 2pm: Treatment choice in an era of change: Decision process on choosing a new product with David Page, Canadian Hemophilia Society.
Saturday July 18 @ 12-2pm: Haemophilia B Webinar
And
@ 3-5pm: Mild/Moderate Haemophilia Webinar
Wednesday July 22 @ 2pm: Gene Therapy Discussion with Declan Noone & Brian O’Mahony
To join us for any of these meeting, please use the link & meeting ID below:
Join Zoom Meeting
[link removed]
Meeting ID: 905 221 0070
If you plan to join, we would appreciate it if you could drop Barry an email at [email protected] (mailto:[email protected]) to give us an idea of numbers.
FYI: We shall be recording the audio and slides from some 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.
[link removed]
Watch I.H.S. Webinars on YouTube
We've been uploading recordings from our ongoing series of webinars so you catch up on the ones you've missed.
So far we have uploaded;
* Paula Loughnane, Senior Physiotherapist at CHI Crumlin discusses 'Exercise and Physical Activity for Children'.
* Dental Care: The New Normal with Alison Dougall and Laura Parkinson
* Heavy Menstrual Bleeding in Adolescent Girls with Dr Geraldine Connolly
You can watch them here ([link removed]) .
For more info, see haemophilia.ie
[link removed]
Mild & Moderate Haemophilia Webinar :: July 18
The Irish Haemophilia Society are pleased to announce that an information webinar for people with mild and moderate haemophilia will take place on Saturday July 18.
This information webinar will give people an opportunity to gain a better understanding of mild and moderate haemophilia, treatments that are available and to get answers to all those unasked questions.
It takes place via Zoom, 3pm – 5pm on Saturday 18 July 2020, and the programme is below.
To attend this webinar, please contact Robert via [email protected] (mailto:[email protected])
Programme:
3pm to 4pm: Mild & Moderate Haemophilia – An update on treatment with Dr. Kevin Ryan, Consultant Haematologist, St. James’s Hospital
4pm to 4.30pm: Living with Mild Haemophilia – A personal perspective with Mr. Brian Byrne, Member of the I.H.S.
4.30pm – 5pm: Questions & Answers.
[link removed]
Haemophilia B Webinar :: July 18
Haemophilia B (or Christmas disease) is a bleeding disorder whereby there is a deficiency of factor IX. With so many new developments in the pipeline, in relation to haemophilia B, we are pleased to inform you that we have organised an information webinar for people with haemophilia B.
Topics will include an update on treatment and developments, novel therapies and gene therapy. We will also have a personal story from a young adult member of the I.H.S.
Education and information is vital and we would therefore encourage as many of you as possible to join us for the excellent webinar.
It takes place via Zoom, 12 Noon – 2pm on Saturday 18 July 2020, and the programme is below.
To attend this webinar, please contact Robert via [email protected] (mailto:[email protected])
Programme
12 noon to 1pm – Haemophilia B: A clinical update on treatment – Dr. Beatrice Nolan, Consultant Haematologist, CHI, Crumlin)
1pm to 1.30pm – Living with Haemophilia B – A personal perspective (Member of the I.H.S)
1.30pm to 2pm – Questions & Answers.
[link removed]
Von Willebrand's Disorder (VWD) Information Day 2020
Saturday, August 29 | Castleknock Hotel, Dublin.
The Irish Haemophilia Society are pleased to announce that an information day for people with von Willebrand’s Disorder (VWD) will now take place on Saturday, August 29 in the Castleknock Hotel, Dublin.
This information day will give people an opportunity to gain a better understanding of VWD and the treatments available and an opportunity to get answers to all those unasked questions.
Please note that no charge is applicable on the day but spaces are limited and you must register in advance to attend.
To register online, please click here ([link removed]) or if you would like to book in over the phone or would like more information, please contact the office on 01 6579900
Programme:
12:00 - 13:00 Lunch
13:00 - 14:30 von Willebrand’s Disorder – An update
Speaker: Dr. Michelle Lavin
14:30 - 15:30 Living with von Willebrand’s Disorder
Speakers: Mr. Donal McCann & Ms. Shannon Carey
15:30 - 16:00 von Willebrand’s Disorder and the I.H.S.
Speaker: Mr. Brian O’Mahony
[link removed]
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 Our Lady’s Children’s Hospital, 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 Our Lady’s Children’s Hospital, 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.
[link removed]
Blood Health 2020
We are delighted to have worked with Health News on their Blood Health campaign once again this year.
A printed publication was enclosed within every copy of the Irish Independent and the content is available online here ([link removed]) .
The campaign featured exclusive content from key thought leaders and industry voices about the impact of Covid-19 on haematology patients, malignancies, thrombosis and more
You can read Brian O’Mahony's piece on how the long-cherished hope of seeing gene therapy for haemophilia is now visible on the horizon, here ([link removed] ) .
#Bloodhealth
[link removed]
Events Update
Hardly a surprise given the current situation we find ourselves in but so far we've had to make some changes to our events:
July
Father & Son(s) Overnight
Dates: Saturday July 4th & Sunday, July 5th
Venue: Lilliput Adventure Centre
FYI: This event has unfortunately been cancelled.
Mild Haemophilia & Haemophilia B Information Day
Date: Saturday 18th July
This event will now take place online, via Zoom.
August
Family Day Out
Date: Monday, August 10th
Venue: Dublin Zoo
FYI: This event has unfortunately been cancelled.
Von Willebrand’s Information Day
Date: Saturday, August 29th
Venue: Castleknock Hotel, Dublin
It is currently planned to proceed with this event
============================================================
** Connect with Us ([link removed])
** [link removed] ([link removed])
** [link removed] ([link removed])
** [link removed] ([link removed])
** Email (mailto:Mailto:[email protected])
** LinkedIn ([link removed])
LINKS OF INTEREST
** Irish Haemophilia Society ([link removed])
** World Federation of Hemophilia ([link removed])
** European Haemophilia Consortium ([link removed])
** Consultative Council on Hepatitis C ([link removed])
** National Haemophilia Council ([link removed])
** Barretstown Camp ([link removed])
** Get Ireland Active ([link removed])
** Children in Hospital Ireland ([link removed])
** Health Service Executive ([link removed])
** Irish Health.com ([link removed])
** Citizens Information Bureau ([link removed])
Copyright © 2016 Irish Haemophilia Society, All rights reserved.
As a member of the Irish Haemophilia Society you have agreed to be on a mailing list from which you will receive monthly eZines from the IHS.
Our mailing address is:
Irish Haemophilia Society
Cathedral Court
New St,
Dublin 8, Dublin
Ireland
This email was sent to [email protected] (mailto:[email protected])
why did I get this? ([link removed]) unsubscribe from this list ([link removed]) update subscription preferences ([link removed])
Irish Haemophilia Society . Cathedral Court . New St, . Dublin 8, Dublin . Ireland
Email Marketing Powered by Mailchimp
[link removed]
Irish Haemophilia Society eZine: July 3, 2020
View this email in your browser ([link removed])
[link removed]
Update from I.H.S. CEO
July 3, 2020
The Society organised 8 zoom meetings for members in the month of June. These included some topics which we have had in mind to cover for some time at our meetings or events. One such topic was heavy menstrual bleeding in pre-teenage and teenage girls. This is a significant clinical problem and we were very pleased to have this comprehensively covered by Dr Geraldine Connolly from the Rotunda hospital.
We had updates on the current state of development with and plans for the new National Childrens Hospital from CEO Eilish Hardiman and on the iPATH (Irish Personalised Approach to the Treatment of Haemophilia) research project from Prof. James O Donnell. We had updates on dental care and the changes which have been necessary in the service due to the pandemic from Dr Alison Dougall and Laura Parkinson from the NCC and an update on dental care and nose bleeds from Dr Kirsten Fitzgerald and Dr John Russell from Children’s Health Ireland at Crumlin. Also, from CHI in Crumlin, physiotherapist Paula Loughnane provided a session on exercise and physiotherapy for children, accompanied by some exercise materials now available on our website.
Health economists Jamie O’Hara and Declan Noone gave an update on the health economics of Covid-19 to the staff and Board members by zoom and finally, looking to the future, Prof. Mike Makris from Sheffield, gave us his view of what Haemophilia care will be like in the year 2030. We have had a busy month of zoom meetings. We hope that those of you who joined benefitted from the meetings.
We encourage more of the members to join our zoom calls for the month of July. We will have 7 zoom calls in July. On July 1^st, we started with an update on the National Coagulation centre from Dr. Niamh O’Connell. Planned zoom topics in July include a workshop type call discussing 17 theoretical people with haemophilia and why they would choose certain treatment options with David Page from the Canadian Hemophilia Society, an Update on Gene Therapy and the types of issues which should be considered prior to Gene Therapy with Declan Noone and I both speaking.
We also have two information events on July 18^th which were originally planned as face to face meetings and which will now be zoom calls. These will be on Haemophilia B and on Mild Haemophilia. Speakers will include Dr Beatrice Nolan and Dr Kevin Ryan and we will also hear about the lived experience of haemophilia B and Mild haemophilia respectively from some members. We have started to post the zoom lectures on the website and plan to continue this where appropriate and where speakers agree. Now that home schooling is finished for the summer, we also hope we see more parents able to join the zoom calls.
National Coagulation centre and Telemedicine
Dr O Connell, in her update on July 1^st discussed the impact of telemedicine. The centre has surveyed the impact and it has been seen as very positive by both patients attending the NCC and by the health care staff.
Video or telephone consultations are now in place with the doctors, nurses, physiotherapists, psychologist and dentist. Links can be sent by text or e mail. In a survey carried out by the centre, the experience of video or phone consultations was judged to be positive in improved access, less travel inconvenience, in meeting healthcare needs and in being able to communicate with the health care professional. It was judged to be a straightforward experience requiring less travel inconvenience. People generally found the technology easy to use. 70% of those surveyed felt it was the same as an outpatient clinic with 10% neutral on the question and 20% of the view that it was not as beneficial as an in person out- patient clinic. The health care workers were also surveyed and they were very positive about the initiative.
Interestingly, they were of the view that video consultations were better for communicating with patients. Approximately 70% were of the view that telemedicine was a viable ongoing care option. The only area where telemedicine did not score well was where phlebotomy was required. Obviously, you can not have bloods drawn during a virtual consultation. The experience has been broadly very positive. We are very pleased to see this innovation and we share the view that the future may well be a blended mix of in person visits (perhaps on occasions where bloods are required) and virtual consultations.
Brian O’Mahony
Chief Executive
[link removed]
Educational Grants 2020
Applications Now Open
We are delighted to announce that applications are now invited for the 2020 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])
[link removed]
Upcoming Webinars
Continuing with our series of Webinars and Q&A Sessions, we have further meetings coming up on;
Wednesday July 8 @ 2pm: Treatment choice in an era of change: Decision process on choosing a new product with David Page, Canadian Hemophilia Society.
Saturday July 18 @ 12-2pm: Haemophilia B Webinar
And
@ 3-5pm: Mild/Moderate Haemophilia Webinar
Wednesday July 22 @ 2pm: Gene Therapy Discussion with Declan Noone & Brian O’Mahony
To join us for any of these meeting, please use the link & meeting ID below:
Join Zoom Meeting
[link removed]
Meeting ID: 905 221 0070
If you plan to join, we would appreciate it if you could drop Barry an email at [email protected] (mailto:[email protected]) to give us an idea of numbers.
FYI: We shall be recording the audio and slides from some 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.
[link removed]
Watch I.H.S. Webinars on YouTube
We've been uploading recordings from our ongoing series of webinars so you catch up on the ones you've missed.
So far we have uploaded;
* Paula Loughnane, Senior Physiotherapist at CHI Crumlin discusses 'Exercise and Physical Activity for Children'.
* Dental Care: The New Normal with Alison Dougall and Laura Parkinson
* Heavy Menstrual Bleeding in Adolescent Girls with Dr Geraldine Connolly
You can watch them here ([link removed]) .
For more info, see haemophilia.ie
[link removed]
Mild & Moderate Haemophilia Webinar :: July 18
The Irish Haemophilia Society are pleased to announce that an information webinar for people with mild and moderate haemophilia will take place on Saturday July 18.
This information webinar will give people an opportunity to gain a better understanding of mild and moderate haemophilia, treatments that are available and to get answers to all those unasked questions.
It takes place via Zoom, 3pm – 5pm on Saturday 18 July 2020, and the programme is below.
To attend this webinar, please contact Robert via [email protected] (mailto:[email protected])
Programme:
3pm to 4pm: Mild & Moderate Haemophilia – An update on treatment with Dr. Kevin Ryan, Consultant Haematologist, St. James’s Hospital
4pm to 4.30pm: Living with Mild Haemophilia – A personal perspective with Mr. Brian Byrne, Member of the I.H.S.
4.30pm – 5pm: Questions & Answers.
[link removed]
Haemophilia B Webinar :: July 18
Haemophilia B (or Christmas disease) is a bleeding disorder whereby there is a deficiency of factor IX. With so many new developments in the pipeline, in relation to haemophilia B, we are pleased to inform you that we have organised an information webinar for people with haemophilia B.
Topics will include an update on treatment and developments, novel therapies and gene therapy. We will also have a personal story from a young adult member of the I.H.S.
Education and information is vital and we would therefore encourage as many of you as possible to join us for the excellent webinar.
It takes place via Zoom, 12 Noon – 2pm on Saturday 18 July 2020, and the programme is below.
To attend this webinar, please contact Robert via [email protected] (mailto:[email protected])
Programme
12 noon to 1pm – Haemophilia B: A clinical update on treatment – Dr. Beatrice Nolan, Consultant Haematologist, CHI, Crumlin)
1pm to 1.30pm – Living with Haemophilia B – A personal perspective (Member of the I.H.S)
1.30pm to 2pm – Questions & Answers.
[link removed]
Von Willebrand's Disorder (VWD) Information Day 2020
Saturday, August 29 | Castleknock Hotel, Dublin.
The Irish Haemophilia Society are pleased to announce that an information day for people with von Willebrand’s Disorder (VWD) will now take place on Saturday, August 29 in the Castleknock Hotel, Dublin.
This information day will give people an opportunity to gain a better understanding of VWD and the treatments available and an opportunity to get answers to all those unasked questions.
Please note that no charge is applicable on the day but spaces are limited and you must register in advance to attend.
To register online, please click here ([link removed]) or if you would like to book in over the phone or would like more information, please contact the office on 01 6579900
Programme:
12:00 - 13:00 Lunch
13:00 - 14:30 von Willebrand’s Disorder – An update
Speaker: Dr. Michelle Lavin
14:30 - 15:30 Living with von Willebrand’s Disorder
Speakers: Mr. Donal McCann & Ms. Shannon Carey
15:30 - 16:00 von Willebrand’s Disorder and the I.H.S.
Speaker: Mr. Brian O’Mahony
[link removed]
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 Our Lady’s Children’s Hospital, 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 Our Lady’s Children’s Hospital, 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.
[link removed]
Blood Health 2020
We are delighted to have worked with Health News on their Blood Health campaign once again this year.
A printed publication was enclosed within every copy of the Irish Independent and the content is available online here ([link removed]) .
The campaign featured exclusive content from key thought leaders and industry voices about the impact of Covid-19 on haematology patients, malignancies, thrombosis and more
You can read Brian O’Mahony's piece on how the long-cherished hope of seeing gene therapy for haemophilia is now visible on the horizon, here ([link removed] ) .
#Bloodhealth
[link removed]
Events Update
Hardly a surprise given the current situation we find ourselves in but so far we've had to make some changes to our events:
July
Father & Son(s) Overnight
Dates: Saturday July 4th & Sunday, July 5th
Venue: Lilliput Adventure Centre
FYI: This event has unfortunately been cancelled.
Mild Haemophilia & Haemophilia B Information Day
Date: Saturday 18th July
This event will now take place online, via Zoom.
August
Family Day Out
Date: Monday, August 10th
Venue: Dublin Zoo
FYI: This event has unfortunately been cancelled.
Von Willebrand’s Information Day
Date: Saturday, August 29th
Venue: Castleknock Hotel, Dublin
It is currently planned to proceed with this event
============================================================
** Connect with Us ([link removed])
** [link removed] ([link removed])
** [link removed] ([link removed])
** [link removed] ([link removed])
** Email (mailto:Mailto:[email protected])
** LinkedIn ([link removed])
LINKS OF INTEREST
** Irish Haemophilia Society ([link removed])
** World Federation of Hemophilia ([link removed])
** European Haemophilia Consortium ([link removed])
** Consultative Council on Hepatitis C ([link removed])
** National Haemophilia Council ([link removed])
** Barretstown Camp ([link removed])
** Get Ireland Active ([link removed])
** Children in Hospital Ireland ([link removed])
** Health Service Executive ([link removed])
** Irish Health.com ([link removed])
** Citizens Information Bureau ([link removed])
Copyright © 2016 Irish Haemophilia Society, All rights reserved.
As a member of the Irish Haemophilia Society you have agreed to be on a mailing list from which you will receive monthly eZines from the IHS.
Our mailing address is:
Irish Haemophilia Society
Cathedral Court
New St,
Dublin 8, Dublin
Ireland
This email was sent to [email protected] (mailto:[email protected])
why did I get this? ([link removed]) unsubscribe from this list ([link removed]) update subscription preferences ([link removed])
Irish Haemophilia Society . Cathedral Court . New St, . Dublin 8, Dublin . Ireland
Email Marketing Powered by Mailchimp
[link removed]
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