1. AMN symptoms and their impact on men

2. About Raremark
Raremark’s vision is to create a future in which rare medical conditions are as recognized as the common
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3. Patient network in rare disease
We’re active in 13 therapeutic areas
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4. Data collection through surveys
We run patient surveys on subjects including:
Location
Diagnosis
Treatment
Symptoms
Quality of life
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5. Bridging the gap with industry
History of diagnosis
Diagnosed patients interested in new treatments
Input to clinical trial design
Real-world experience
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6. Insights in adrenoleukodystrophy (ALD)

7. ADHD the most common misdiagnosis
5 years
On average, it took five years* for someone to be diagnosed from first experiencing symptoms
39%
39% of people received at least one misdiagnosis
ADHD
Most common misdiagnosis. Others included: fibromyalgia, neuropathy, anxiety and depression
Sample size = 33 participants, surveyed March *Based on 29 participants who were diagnosed after experiencing symptoms.
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8. “Most doctors we dealt with for my grandsons had no knowledge of ALD/AMN so we usually educated them about the disease. My neurologist now knows more about ALD/AMN than any other doctor we have dealt with through the entire process.”

9. ALD Life/Raremark AMN survey

10. Where are the knowledge gaps?
AMN survey
Adrenomyeloneuropathy (AMN) is a rare inherited metabolic disorder that affects around one in 25,000 people
Where are the knowledge gaps?
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11. Who’s the AMN survey for?
Men aged 18 or over
Confirmed diagnosis of AMN
Living in the UK
Have not previously had a bone marrow transplant
Why take part?
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12. Get in touch: emily.armstrong@raremark.com pete.chan@raremark.com
HONcode standard for trustworthy health information
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