Update from I.H.S. CEO | May 15, 2020

May 15th, 2020

You may have noticed recently, if you logged onto the website, that the Society has a new tagline under the organization name. While we remain named “The Irish Haemophilia Society”, we have added underneath a tagline stating, “Representing people living with haemophilia, von Willebrand’s and other Inherited bleeding disorders”. This will now be reproduced on our headed paper and social media accounts. The Society has always offered services and support to all those with inherited bleeding disorders, but we accept that this may not be obvious from the name of the organization. We would like to have more members with von Willebrand’s and with rare bleeding disorders so that we could offer them more services and support. In our new strategic plan for 2020 to 2024, we will be carrying out a range of actions and initiatives to provide this enhanced level of services and support.

Our World Haemophilia Day event this past month was due to be on the topic of von Willebrand’s. This has now been postponed until August, but it will take place. The information day will be accompanied by a new information booklet and a short animated video which we can also use to raise public awareness of VWD and encourage more people with VWD to contact the Society. We will also be working with the comprehensive care centres to further these objectives. The new tagline is an important element of this strategy. If people with VWD or a rare bleeding disorder are seeking information, the tagline lets them know that we are there to offer support and information. We will be advertising this via the centres and hopefully it will make it easier for a person with VWD or a rare bleeding disorder to find us if they are searching online for information.

Our series of Zoom meetings for members continues. This week, we had a meeting on resilience with the psychologist from the NCC. Next week, we will have a similar meeting with the psychologist from the pediatric centre. Future planned meetings include updates on Hemlibra for parents, the Lighthouse project, physiotherapy and exercise for children, the iPATH (Irish Personalised Approach to the Treatment of Haemophilia) Research project and an update on the new National Children’s hospital.

Brian O’Mahony
Chief Executive

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