Forty eight delegates from 18 countries gathered in The Hague, Netherlands on 27-28 June 2013. The delegates were people with haemophilia, parents of children with haemophilia, healthcare professionals, and other experts within haemophilia.
Delegates provided a range of recommendations for areas to focus on to improve psychosocial issues for people living with haemophilia.
The HERO Summit 2013 highlights video features interviews with key summit delegates and their assessment of how HERO can improve haemophilia care. The video is available in a 4 minute and a 9 minute version (9 minute version below)
Interested in further details on the themes addressed and recommendations provided? Read the summary report
The meeting served as inspiration to find ways to take action based on the findings. Participants were able to take advantage of each other’s perspectives and, together, a wealth of ideas was developed for addressing the unmet psychosocial needs of people with haemophilia.
Below are some quotes from enthusiastic participants:
"We have a lot of knowledge and skills here, all with different perspectives, and one piece of information which might seem irrelevant to one person may spark a great idea in someone else during our discussions,"
"Concrete improvements are badly needed. The last 10–15 years, the haemophilia community has been bombarded by questionnaires on quality of life. Now, they just want answers to their needs."