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.
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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.
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Acheson Kerry 22 March, 2017This week we meet Tilly, Tom and Tim’s younger sister. She was born with no complications and breezed through her early years with good health. As she starts to grow though, you can see that Tilly looks different to her brothers. Read more about their journey so far on our blog: https://lnkd.in/dzd4_T8
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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
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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.
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Not so rare
Acheson Kerry 1 March, 2017Did you know – Rare Diseases affect more than 350 million people worldwide? Today we will be supporting #RareDiseaseDay to help spread global awareness #notsoRARE #medcomm
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Not so rare
Acheson Kerry 1 March, 2017Rare diseases are more common than you think – this #RareDiseaseDay let’s care for rare and help spread awareness #NotSoRare
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Not so rare
Acheson Kerry 1 March, 2017Let’s help increase understanding of the reality of #rarediseases #notsoRARE
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Not so rare
Acheson Kerry 1 March, 2017Today is #RareDiseaseDay. Did you know a patient will end up visiting several doctors before getting an accurate diagnosis? Let’s work together to heighten awareness #notsoRARE Engel PA, Bagal S, Broback M, Boice N. Physician and patient perceptions regarding physician training in rare diseases: The need for stronger educational initiatives for physicians. Journal of Rare Disorders, 2013; 1(2): 1-15.
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Acheson Kerry 1 March, 2017We’re launching a blog to illustrate the time it takes for a child to receive a diagnosis for a #raredisease
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Not so rare
Acheson Kerry 1 March, 2017Research into #rarediseases can save and change lives. On #RareDiseaseDay let’s have a common cause to help increase awareness. Engel PA, Bagal S, Broback M, Boice N. Physician and patient perceptions regarding physician training in rare diseases: The need for stronger educational initiatives for physicians. Journal of Rare Disorders, 2013; 1(2): 1-15
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