RARE STORIES
Sandra has never met anyone with the same rare disease
Hear her talk about what it is like to live with Temporomandibular joint ankylosis.
The Lindsten family: rare diagnosis of XLH in four generations
Hear their story on being the expert when dealing with the healthcare system.
In the gaming world, Hugo is just like everyone else – only a little better!
Hear Hugo talk about what it's like to live with FOP.
Maria on living a rare life
"What is normal?", says Maria, who was born with Dysmelia.
Jonas runs his own business and sees the advantages of being unique!
Here you can hear Jonas talk about life with an invisible disability.
Karin is living with Marfan syndrome, which takes a toll on her body
Hear Karin talk about living a good life with a rare condition and many visits to various specialists.
Jakob calls for a gateway into the adult world
Hear Jakob talk about having Sturge-Weber Syndrome – and being pushed into life with rare needs.
Diana is rare – but she has been fortunate with her healthcare!
Hear Diana talk about what it's like to live with frequent doctor visits and a nutritional drip.
Cecilia thinks it is important to be part of a social context
Hear Cecilia talk about what it's like to live with Apert syndrome.
Kicki is living a fulfilling life – with Friedreich's Ataxia
Hear Kicki's story about accepting what she can't change.
Jenny has Möbius syndrome and a strong need for alone time
Hear Jenny tell us about the feeling of finally getting a smile. And about being one of 50 in Sweden.
Mattias is young and rare – with thoughts about the future
Hear Mattias talk about life as a creative and sports-loving guy with CVI.
Philip is his own expert and takes matters into his own hands
Hear Philip talk about living with a rare skin disease – and about sharing his experience.
Scott is tough and kind – and rare
Hear about Scott, who had an unfairly tough start in life but continues to fight his way forward with Apert syndrome.
Sofia has a rare vision defect but runs just as fast as anyone else
Hear about Sofia and how her older sister Sandra makes life both easier and safer.