How to ‘Light Up for Rare’ on Rare Disease Day
Landmarks worldwide will light up on Rare Disease Day.
Features
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Rare Patient Voice rewards patients and caregivers for sharing their insights
Recruitment company Rare Patient Voice has more than 200,000 registered patients and caregivers spanning rare, chronic and complex conditions.
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What’s the link between ATTR-CM and spinal stenosis?
The connection between the two conditions has to do with the root cause of ATTR-CM itself.
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What to expect during a heart biopsy to confirm ATTR-CM
The procedure typically takes from 30 minutes to an hour, and you shouldn’t feel any pain.
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When to seek a second opinion after an ATTR-CM diagnosis
You shouldn’t feel uncomfortable asking your doctor for a referral to get a second opinion.
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How to keep track of your medical records for ATTR-CM
Keeping comprehensive, detailed records will improve your understanding of your disease and how it is managed.
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How to handle anxiety during the wait for ATTR-CM test results
It’s normal to feel anxious while waiting for scan results.
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Advice for dealing with a difficult ATTR-CM prognosis
The more you understand, the more empowered you’ll feel.
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What is an ATTR-CM mutation carrier?
Genetic testing is important when a hereditary disease is detected in your family.
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What is Donegal Amy?
About one in 100 people in Donegal, Ireland, may have the genetic variant for this form of hereditary ATTR.
- Living with ATTR-CM: When did my legs stop doing that?
- What living with a chronic illness has taught me
- The cruise I needed, and the one I didn’t expect
From the
ATTR-CM Ambassador
ATTR-CM Ambassador