Resources

X-Linked Hypophosphataemia (XLH) – July 2017

Videos and slides from the Patient and Family day in Manchester, which featured a  varied programme with talks by leading metabolic clinicians, discussing the latest innovations in XLH along with networking opportunities for families.

XLH – X-Linked Hypophosphatemia – is a genetic disorder that affects about one in 20,000 people. Typically, it is passed from one generation to the next, but sometimes appears in an individual with no family history of XLH.

Lindsay Weaver, Climb’s Executive Director – Introduction to the XLH Patient and Family Day.

Professor Nick Shaw – Clinical manifestations and medical treatment of XLH in children and adolescents.  View the slides here

Professor Peter Selby – Clinical manifestations and medical treatment of XLH in adults.  View the slides here

Dr Kay Hood – Dental manifestations of XLH.  View the slides here

Oliver Gardiner – The XLH Network.

Tahir Khan – Surgical treatments  of limb deformities and fractures in adults and children with XLH.  View the slides here

Susan Murray – Living with XLH; a patients perspective.

Transition; Climb’s Annual Conference – October 2016

Slides from the Climb annual conference on the subject of transition from paediatric to adult care.

Farhana Ali, Genetic Alliance UK – UK Strategy for Rare Diseases.  View the slides here

Dr Robin Lachmann, UCLH – An Introduction to Transition.  View the slides here

Muscular Dystrophy UK – Benefits and Practical Advice.  View the slides here

Charlotte Dawson, University Hospital of Birmingham – Good Practice where no Adult Services Available.  View the slides here

Julie Howard, Leeds and York Partnership NHS Foundation Trust – Introduction to the Complex Multiple Impairment Team.  View the slides here