We are excited to share the programme for our VWD & RBD Information Day in July!

Register free of charge by contacting Louise in the office on 01 657 9900.

Celebrating our first world menstrual health day today! Raising awareness for period health at the PCC Children's Health Ireland #MHDay2024 #periodfriendlyworld #IBleedToo #WGBD #KnowYourFlow Beatrice Nolan Saad Ahmed Paula Loughnane Ruth Hunter Nolan Yotsmori

Happy World Menstrual Hygiene Day!🩸

As part of a recent initiative, we provide women and girls at all our conferences with free period products. It's important to remember that heavy menstrual bleeding is a common symptom of bleeding disorders. #PeriodPositive Brian O Mahony

Women and girls bleed too!
In this first episode in a three part series, Dr. Michelle Lavin @Sortoutbleeding and Dr. Sarah O'Brien discuss the symptoms of #bleedingdisorders and the impact it may have.

Listen here: ow.ly/moYf50RSl8j
Spotify: ow.ly/6HXh50RSl8k
#Meded

With Dr Neelam Dhingra Patient Safety lead World Health Organization (WHO) at the IAPO/Synergist side event #WHA77 I spoke about the crucial and formal involvement of IrishHaemophiliaSoc in decision making in haemophilia in Ireland Amanda Bok

We are excited to see you today at IAPO and The Synergist's side event at #WHA77 to discuss the vital role of patient orgs in delivering #UniversalHealthCoverage !
A great start to the discussions ahead of the World Health Assembly! To learn more 👉 bit.ly/3UOMP6m

Letters have been sent to all relevant members for our upcoming VWD & RBD Information Day in July in the Grand Hotel in Malahide, Dublin. The information day is free of charge, so please do come along!

To register, call Louise in the office on 01 657 9900.

See our updated programme of events for the rest of the year 👇

Our information day in July will incorporate rare bleeding disorders as well as von Willebrand Disorder.

Brian O Mahony

With our Ageing Conference just gone, our next event is the von Willebrand Disorder Information Day.

This will be taking place in the Grand Hotel in Malahide in Dublin on July 20. Stayed tuned for more information and the programme for the day. 📢

The IHS offers accommodation to members travelling up to Dublin for an appointment in St. James's Hospital or CHI Crumlin. The apartments are for those attending clinics or receiving treatment and for their immediate family.

See haemophilia.ie/.../services-a… for more information.

The report from the UK Infected Blood Inquiry was released at 12.30pm today. A summary of failures:
Infections, leading to deaths illnesses and suffering were caused needlessly to PWBD by:
Failures in the licencing regime by allowing import of CFCs made in US or Austria, 1/5

Many people with von Willebrand disease (VWD) have few or no symptoms. Symptoms can also change over time. Learn what signs to look for and more about #VWD here: bit.ly/44ohv28 #BleedingDisorders #TreatmentForAll

David Page from the Canadian Hemophilia Society opens the Sunday of our Ageing Conference with some interesting info about Candadian haemophilia care. In Canada they have 14 lifespan HTCs, 6 paediatric centres and 6 adult centres. Unlike here, centres do not have external audits.

This afternoon, Michael Makris spoke about the range of treatment choice available, from standard half-life to extended half-life to 'revolutionary' new therapies like gene therapy. He also discussed some factors ageing PwH should consider before choosing/changing their treatment.

Dr. Cleona Duggan IrishHaemophiliaSoc Ageing conference reiterates many Irish people are deficient in Vitamin D. Advises they should have their levels checked and take supplements as required. In an earlier study at Cork University Hospital, 87% PWH were Vitamin D deficient

Healthy Ageing domains of influence. Dr. Patricia Byrne IrishHaemophiliaSoc Ageing Conference

Dr. Patricia Byrne from St James's Hospital discusses Ageing with positive mental outlook at our Ageing Conference now, starting the session with a lovely meditative exercise focused on calming our nervous systems down and relaxing us.

Our IrishHaemophiliaSoc Ageing Conference begins in Tralee with a lecture on Comprehensive Care and Ageing

Calling those who menstruate!📢

Please take the WOMEN survey, led by researchers at TCD & St James's Hospital to investigate menstrual health & physical activity in women with/without bleeding disorders.

The survey is closing soon so make sure to fill it out

bit.ly/43sSJ0F

The European Health Insurance Card (EHIC) allows you to access public healthcare in another EU/EEA state free of charge or at a reduced rate.

It's important that every family members has one of these cards when travelling abroad.

Find out more here:
www2.hse.ie/services/schem…