Not so rare

Acheson Kerry 6 March, 2017

We want to share what it’s like to live with a #RareDisease and show how long it can take for a patient to get diagnosed. Follow our blog:https://lnkd.in/dzd4_T8 to read about Tom and how his symptoms develop over time. Our first post shares his parents’ concern about the initial symptoms in the first two years of his life. #NotSoRare

News, Onyx #notsorare #awareness, rare disease

Not so rare

Acheson Kerry 19 July, 2017

Meet Tim. Tim is Tom’s little brother. From birth he had some health complications, but quickly recovered. However, like Tom he had trouble with his speech at the age of 2. The explanation? “He’s just like Tom.” Read more about brothers Tim and Tom on our blog and follow the patient journey and lengthy diagnosis for a child living with a rare disease.

Click here to read more >>

Duchenne muscular dystrophy

Acheson Kerry 31 May, 2017

Duchenne muscular dystrophy is a devastating disease that we still don’t fully understand, and currently there is no cure. This article describes current and new treatment therapies as well as the many challenges scientists still face. https://lnkd.in/gYkEcuH

What is Cystic Fibrosis and how can we treat it?

Acheson Kerry 30 May, 2017

Cystic fibrosis is a rare disease that causes damage to the respiratory, digestive and reproductive systems. Our recent article presents what is currently known about this disease as well as existing and future therapies. https://lnkd.in/gkMERE4

Not so rare

Related Posts

Not so rare

Duchenne muscular dystrophy

What is Cystic Fibrosis and how can we treat it?