Rare Disease Day 2015

Sobi shares study findings on HT-1 adherence in adolescent patients, to highlight life-long health outcomes for rare disease patients

In recognition of Rare Disease Day 2015, themed "Living with a Rare Disease, day-by-day, hand-in-hand", Sobi will host an international webinar with the objective of raising understanding of one of the challenges that can be encountered by families living with a rare disease. The seminar will share the findings from the company's investigations around improving adherence to treatment - particularly in adolescents - for the very rare disease Hereditary Tyrosinaemia type-1 (HT-1), which - if not treated - can be fatal.

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness about rare diseases and their impact on patients' lives and on the lives of families affected by a rare disease or condition.  Great strides have been made in early diagnosis and effective treatment, but securing that patients are able to continue with their treatment at all stages of their lives is a critical part of securing the best health outcomes, particularly when chronic, potentially degenerative conditions are concerned.

"People living with a rare disease and their families and caregivers have a need for support and information to ensure that they do not feel isolated or alone," says Geoffrey McDonough, CEO and President of Sobi. "The adherence programme is one of several activities developed together with the rare disease community intended to increase knowledge about rare diseases such as HT-1, and to support patients through a life-long journey from diagnosis to sustainable long-term treatment."

Collaborating with the HT-1 community, Sobi has identified treatment adherence in adolescents as one area in need of further support, to secure that people with chronic, potentially degenerative conditions stay on treatment. The free webinar will allow caregivers to take part in findings from investigations into treatment adherence, looking at the beliefs, attitudes and behaviour of adolescent patients living with HT-1, their families and their healthcare teams. The webinar will be recorded and made available to caregivers engaged in HT-1 globally.