Welcome to our discussion group for rare and undiagnosed conditions
Rare conditions affect more people than the name might suggest, though if you have one then you may well feel alone at times. But as Shona Cobb said recently in her excellent guest post about living with Marfan syndrome: “Each rare condition in itself is truly rare but such conditions collectively are not since it is estimated that 1 in 17 people have one, so I’m not alone in suffering with an uncommon condition.”
That’s why we wanted to create this space for those with rare conditions to share their experiences and advice.
Likewise, for anyone with an as yet undiagnosed condition, the experience can be upsetting and unsettling in equal measure. This group is also for anyone without a diagnosis to share their experiences and support with people in a similar situation.
If you’d like to share your experiences or ask advice about anything related to rare or undiagnosed conditions, simply click the ‘new discussion’ button at the top right.