Only people with haemophilia and their families can fully understand what it means to live with haemophilia. That’s why Sobi works closely with people with haemophilia, their families and healthcare professionals to help develop innovative treatments and tools that are valuable for the whole haemophilia community. Here are some of the things that we have co-created with the help and unique insights of people with haemophilia and their families:
Children living with haemophilia sometimes have a hard time talking about their condition. Sobi, with the support of Consultant Nurse Kate Khair and her team at the Great Ormond Street Hospital for Children, has developed a free iPad app — Magic Movie Maker — that lets children create their own movies and share their experiences with family and friends.
After speaking to people with haemophilia, carers and healthcare professionals across the European haemophilia community, we discovered that packaging and syringes do not always meet the needs of people with haemophilia. Packaging is sometimes bulky and syringes can be difficult to manage, particularly for children and for adults with impaired joint mobility (which can be a consequence of haemophilia). This could impact treatment administration and compliance.
As a result, we were inspired to develop a more user-friendly package. We hope that this collaborative improvement will help make life easier for people living with haemophilia.
In recent years, the EHC has been focusing attention and programmes on developing its youth leadership, with the objective of securing that the current leaders pass on their experience to prepare the future of the organisation. One way that Sobi aims to support these development activities is by donating its company symposium during the annual EHC Conference back to the EHC, to create a forum where young EHC members can practice debating and advocacy skills together with senior EHC leadership. This happened again for the third time on 7 October 2016 at the Annual Conference in Stavanger, Norway.
In addition, in 2015 via an unrestricted grant to the EHC Sobi supported a film project by director Goran Kapetanovic. He developed a full length documentary following individuals with haemophilia in five European countries to understand their challenges and daily lives. The films can be viewed here.
With the advice of senior physician Susanna Ranta and nurses Evangelia Vlachou and Eva Strand from Barnkoagulationsmottagningen (the Children’s Coagulation Clinic), Karolinska University Hospital, Sweden, and the insights of FBIS (Förbundet blödarsjuka i Sverige — the Swedish haemophilia patient association), Sobi has produced two booklets for parents and guardians of children with haemophilia. One is a guide to the disease and its management to help when caring for a child with haemophilia. The other is a helpful, reassuring reminder of the injection process. Download the Giving Your Child Injections booklet and the Caring for a Child with Haemophilia booklet here.
For young people with haemophilia, the transition from adolescence to adulthood is especially challenging. In Italy, “Feel the Gap” brings together small groups of adolescents and young adults to encourage each other through this difficult time.