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.
read more >>Duchenne muscular dystrophy
Acheson Kerry 31 May, 2017Duchenne 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
read more >>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
read more >>Not So Rare
Acheson Kerry 13 April, 2017Tom and Tim finally reach a diagnosis after finding genetic faults known as AGU. The doctor couldn’t tell them much more, so they were sent to a rare disease specialist for further consultations. For Tom and Tim, and their families, it’s been a long process to reach a clear diagnosis. Sadly, like many other rare diseases, there is no therapy or treatment available. Rare diseases affect more than 350 million people worldwide. We need to support people like Tom and Tim to raise awareness of the long and stressful journey through to diagnosis, to understand the reality of living with a rare condition and to support those families affected by a rare disease.
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Not so Rare
Acheson Kerry 3 April, 2017In our #RareDisease patient journey, Tom and Tim are finally starting genetic testing to try and reach a diagnosis – read more about their journey and stay tuned to find out what happens.
read more >>Not so rare
Acheson Kerry 15 March, 2017Rare Disease Patients’ Journey: As Tom and Tim grow, more symptoms arise. Tom is struggling to keep up in class and not progressing academically at the same rate as his class mates. It’s also being noticed that Tim is struggling with his hearing. Read more about their journey so far on our blog: https://lnkd.in/dzd4_T8
read more >>Not so rare
Acheson Kerry 10 March, 2017A person living with a rare disease will have a full diagnosis of an average of 4.8 years. We’re following the journey of brothers Tim and Tom, who are at the beginning of their symptoms. Their story, as well as hundreds and thousands like them #NeedToBeHeard.
#NotSoRare
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Not so rare
Acheson Kerry 6 March, 2017We 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
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