Opportunities to improve the lives of those with rare conditions

Dystonia is a neurological movement disorder affecting over 100,000 people in the UK, yet so few have heard of it. We aim to change that. What is dystonia? Dystonia is a neurological movement disorder. However, there is so much more to this often misunderstood condition. Dystonia causes uncontrollable muscle spasms, triggered by incorrect signals from … Continued

Endometriosis care has been neglected, harming patients and the economy. This Endometriosis Action Month, governments must take bold action to improve care for the 1 in 10 affected in the UK. If we are to debunk the myths that are riddled within our society about endometriosis, such as ‘It’s just a bad period’ or ‘It’s … Continued

Palliative care for children and families plays a vital role in supporting those with life-limiting conditions. But services – delivered by hospitals, hospices and community services – are under strain. Supporting every family A held hand, a listening ear, support for siblings – every child and every family deserve dignity, comfort and compassion, especially those … Continued