On Wednesday 6th June 2018, Henry was honoured to attend the British Bone Society reception at the Houses of Parliament to celebrate its 50th anniversary milestone. This was partly out of the request and suggestion of North West Norfolk constituents who suffer from this dreadful debilitating disease. Henry saw first-hand the really excellent work the society does to support those living with Osteogenesis Imperfecta (OI). One of the society’s truly inspiring visions is to ensure all people affected by OI and their families feel they have a Society that understands their needs, supports them through their difficulties and continues to work towards improving their quality of life.
The Brittle Bone Society was founded in Dundee in 1968 to provide support to people with OI. The society was the first patient support group established to support people with this rare condition. OI is rare, and thought to affect 1 in 15,000 people in the UK. Nevertheless, the work the society does is incredibly important and to this day they are still the sole UK organisation set up to address the needs of people born with OI.