It wasn’t long before Mum and Dad realised that there was something wrong with me. From time to time I would cry incessantly for long periods of time.

Unlike other families, when we found out we were expecting our first baby, we knew that our baby would have a 50 per cent chance of being born with ‘the worst disease you’ve ever heard of’.

As a 36-year-old young man who has endured a lifetime of physical skeletal pain, trying to live a normal life has been rather impossible.

At the end of 2016, I was changing insurance companies and the new company sent me for blood tests.

On the 21st December, 2015 Eva was born. Instantly, things were not right. I was laying awake in the hospital listening to other babies cry but mine didn’t make a sound.

In the rare disease space, we cannot underestimate the importance of international collaboration and linkages.

I have a unique type of intestinal failure (IF) called Chronic Intestinal Pseudo-Obstruction (CIPO).

Osteogenesis Imperfecta (OI), also known as ‘Brittle Bone Disease’ or ‘Glass Bone Disease’.

My name is Jessica. I was diagnosed at 8-years-old with a rare disease called Ehlers-Danlos syndrome type 6 or Kyphoscoliotic Ehlers-Danlos Syndrome (KEDS).

How to live half a life. I only live life a little bit. Not to the fullest, not with gusto and excitement. I live a life that I never planned for.

Grace was diagnosed in October 2017 with idiopathic pulmonary hypertension (IPH). Before the diagnosis, she was having fainting episodes and getting breathless very quickly.

In 2010, having completed a saliva sample via www.23andme.com looking into our heritage, we received an updated health report (no longer given) near the end of June 2014...

Keeping my world afloat – Ever wondered what it feels like to live with mal de debarquement syndrome (MdDS)?