Pharma firm Sobi has teamed up with the UK’s leading children’s hospital Great Ormond Street Hospital (GOSH) to help patients with a rare bleeding disorder.
The firm says that children living with haemophilia sometimes have a hard time talking about their condition, or describing the implications the disease has on their life.
Sobi says to help with this it has, with the support of consultant nurse Dr Kate Khair and her team at GOSH, developed the ‘Magic Movie Maker’.
Now being introduced in the UK, the free iPad app has been created to enable children to enlighten others about what it means to live with haemophilia.
Dr Khair said: “For children with haemophilia, breaking the stigma and being able to live as normal a life as possible is as important as an effective treatment. The app is a great initiative, and I am very happy that it is now available.
Haemophilia is a rare condition that almost exclusively affects boys. A reduced or missing coagulation factor in the blood impairs the body’s capacity for blood clotting, which essentially means that injuries take a longer time to heal, and people with haemophilia can experience bleeding episodes that cause pain, irreversible joint damage and life-threatening haemorrhages. The disease is mainly treated by injection of the missing factor.
Sobi said in a statement that because the condition is so rare, most people who encounter children with haemophilia do not know what haemophilia is, how it is treated or how it affects the child’s life. Nor is it an easy topic for a child to bring into a conversation, the firm added.
Children with the disease can feel isolated and different having a condition that few friends understand and adults can be hesitant to invite a child with haemophilia into their home for fear of accidents.
Philip Wood, VP of commercial head haemophilia at Sobi, said: “Sobi is committed to supporting the haemophilia community beyond developing pharmaceuticals. We wanted to create a playful, positive way for children to share their experiences of living with haemophilia.
“The Magic Movie Maker is a way for kids to have fun while sharing their experiences of what it is like to live with haemophilia.”
The app is available for free download on the App Store, and can be used on iPads.
One of Sobi’s lead products is its haemophilia drug Elocta (Antihemophilic Factor (Recombinant)).