top of page
Home
About us
Blog Posts
Contact Us
Five minutes with...
My Life, My Genetics
Resources
RARE Recruitment
More
Use tab to navigate through the menu items.
RARE
Youth
Revolution
Empowering young adults and their families within rare disease communities
Collaborating with Dr Hen Says to crack medical gaslighting
RARE Youth Revolution announces new genetics and relationships project — ‘My life, my genetics’
My Experience at RAREfest22
News & events
More than I ever imagined
Hope is a tiny spark that can survive the darkest nights
"We can’t choose the cards we are dealt with in life, but we can choose how we react to them”
our voices
Advocacy Corner: Lea Jabre
Necrotising enterocolitis (NEC) and its long-term complications: Lakevia Ward’s experiences
Undiagnosed Children's Day: a puzzling rare disease journey
Overcoming Barriers To Freedom
The importance of advocacy: Raising awareness for neurofibromatosis
Ten Things I Wish You Knew (from an Ambulatory Wheelchair User)
Communicating effectively with young people in healthcare
The importance of engaging young people in healthcare
RARE Youth Revolution announces new genetics and relationships project — ‘My life, my genetics’
Empowering the Tay-Sachs Community through Video
Zach's Law - A Step For Changing the Lives with Epilepsy
My year at RARE Youth Revolution
World Will Remember You Dad book review
Females with X-linked Diseases Aren’t “Just Carriers"
My rare disease podcast to my rare disease products!
Advocacy
Why academia drives out young, chronically ill students
How Social Media Has helped me live with a rare condition
Empowering the Tay-Sachs Community through Video
Science & tech
Reviewing the Sociability App - Helping disabled people find accessible places
Seasonal Affective Disorder
A Merry Online Christmas
COLUMNISTS
Back to Top
bottom of page
