Emma Buysman, Parent Advisor and Super Rare Liaison for CAN, explains: 

We are super excited to be joining forces with the other charities, to help raise awareness and support amongst fellow rare disease communities; believing that a greater community will aid a higher level of research and raise awareness across lots of levels!

The challenges on the NHS are well documented following the recent pandemic. Our commitment has always been to raise funding to help aid additional research projects to both raise awareness and investigate the conditions our patients share; seeking progress in both early diagnosis and treatments. We hope this venture will also lead to further community network opportunities and greater understanding and knowledge of the rare anaemias within other medical specialists. 

As a parent of a patient I am passionate about ventures which improve early diagnosis and additional family support during the earliest times for patients and their families. The conditions we face are generally ones we have to learn to live with, rather than cure, and establishing that early support network and knowledge of who to ask for guidance is so vital for mental as well as physical health. 

I’m planning a fundraiser hike with my son; and will be encouraging other CAN members to join us in the beautiful Chilterns!