Saturday talks

Talk synopsis & speaker profile



13:30 UNTIL 13:55

Cambridge Rare Disease Network - RAREfest | Speaker - Rebecca Pender 1

Rebecca Pender

The Power of the parent voice – moving towards collaborative and person centred health and social care

Talk synopsis: Following the experience Rebecca and her family have had, battling to receive a diagnosis of a rare genetic condition and subsequently being “left to it”, Rebecca has a vision of where she thinks our system needs to be heading in terms of raising awareness and managing care pathways for rare conditions. She’ll talk about using the most valuable resource available when treating patients with a rare diagnosis: themselves; their families; and carers. Rebecca is rallying anyone with a passion for changing the narrative and supporting carers and professionals to work TOGETHER to join her in her mission.

Bio: Rebecca Pender is based in Glasgow, Scotland and one of her many hats she wears is mum to three young girls under six years old. Her eldest daughter, Hannah, has an extremely rare genetic condition called Inv Dup Del 8p, and also lives with epilepsy, brain abnormalities and a learning disability.

Rebecca is a huge champion of disability rights and is determined to break down barriers for disabled people in areas like inclusion, collaborative care with health and social care providers and social injustice.

Click to visit Rebecca’s website.

© 2018 Cambridge Rare Disease Network  |  Website designed by Suzanne Morris  using WordPress  |  Read our privacy & cookie policy
Registered Office: 19 Sedley Taylor Road, Cambridge, CB2 8PW  |  Registered Charity Number: 1166365  |  Company Number: 9798317
To contact us please send an email