The Alliance brings together twelve patient groups from around the world to amplify the voice of people with x-linked hypophosphatemia (XLH) and related disorders.
XLH is a rare inherited condition t hat causes significant skeletal deformities in people from a young age, resulting in lifelong pain and disability. Usually diagnosed in childhood the impact gets worse as patients get older and affects every aspect of their lives. As Tia from Finland says “XLH makes it difficult to live the life I want” .
Standards of care must be improved if people with XLH and related disorders are to be given the opportunity to live life to the full. The Alliance is participating in the International Congress on Children’s Bone Health (ICCBH) 2019, to contribute to discussions that will lead to a better understanding of the disease and the available treatment options for patients.
One of the founding members of the Alliance, Tenna Toft Olesen, will share her experience as someone who has XLH and how she copes with the disease as the mother of a child that also inherited it.
Patient groups, doctors and nurses alike will all be celebrating XLH Awareness Day on Sunday 23rd June both in Salzburg and across the world.