Why did we decide to sit and write a Rare Disease Framework?

Read the first two paragraphs of the framework's foreword as written by Sir Al Aynsley-Green Kt. for the answer.

Sir Al has spent his life advocating for children both with the NHS in paediatric endocrinology and in politics as the UK's first Children's Commissioner.

Here is a small part of what he has to say:

"Imagine the scene. You are the parents of an eagerly awaited newly born infant, expecting the child to be a healthy, ‘bonny bouncing baby’. Then someone comes along and says ‘Sorry, guys, you have a child with not only a serious problem but one that will be life-long’. Your life changes immediately, your hopes and expectations for your child’s future dashed to pieces replaced by grief over what you have lost, and deep uncertainty over what will happen next. ‘Falling off a cliff into a swamp of despair and fear’ is how one father described it to me.

I have sat with countless families listening to their often harrowing stories of the ‘journeys’ they have experienced with their child, them being particularly angry over how the bad news was conveyed to them, the lack of compassion for them in their hours of grief, alongside deep frustration in getting honest answers to their manyfold questions. They find the ‘bunkers and silos’ between health agencies to be massive obstacles to overcome immediately, then followed by what they perceive to be insurmountable failures to get needs-based, integrated plans declared across health, social care, and education."

Can there be any better reason to support the creation of the framework?

It’s time to make a difference!