Month: April 2020

Plan for Beginning Hemlibra

We had another very successful Webinar yesterday; a very interesting and engaging session on Hemlibra with Dr Beatrice Nolan and CHI Crumlin colleagues. We should have a transcript of the session soon but as requested yesterday, the team @ CHI Crumlin have provided a plan for beginning treatment with Hemlibra. If you have any questions or …

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Physiotherapy Update: National Coagulation Centre, St James\’s Hospital

Just a short note to inform you that the physiotherapy team in the National Coagulation Centre in St James\’s Hospital, will be doing a survey of people with severe haemophilia that attend the National Coagluation Centre. They will be looking for feedback on their annual physiotherapy and Haemophilia Joint Health Score (HJHS) assessment service for people …

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Mary Kavanagh Appointed new Nurses Committee Chair for EAHAD

We were very pleased to see that Mary Kavanagh, the Nurse specialist from Children’s Health Ireland at Crumlin has just been appointed as the new Chair of the European Association of Haemophilia and Allied Disorders (EAHAD) Nurses committee. This is well deserved as Mary has provided excellent care and expertise to children with haemophilia for …

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Physical Activity Resources for Children & Adolescents with Haemophilia

Keeping active, given the current situation we find ourselves presented with, is not without its challenges. The same goes for activity for children & adolescents with Haemophilia – thankfully we can help with the latter. We have been sent \’Physical Activity resources for children and adolescents with Haemophilia\’ which was kindly compiled by Paula Loughnane, …

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EHC Discussion: Future Perspectives & Bleeding Disorders Treatment Options

Much like ourselves, the current COVID-19 pandemic has scuppered the European Haemophilia Consortium (EHC) events and World Haemophilia Day plans. They, like us, are continuing to organise events, talks and engage online. Below is a discussion on ‘Future Perspectives and Bleeding Disorders Treatment Options’ EHC President Declan Noone; Prof. Flora Peyvandi & the I.H.S.’s very …

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More Webinar and Q&A Sessions

Following the success of our two Webinars and Q&A Sessions last week, we have decided to continue with the series. Further meetings have been organised for; Wednesday, April 22nd @ 11am. Haemophilia Care in Europe (Brian O\’Mahony, I.H.S. CEO) Wednesday, April 29th @ 11am: Hemlibra Information for Parents (Dr. Beatrice Nolan, Paediatric Consultant Haematologist, CHI …

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