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A Rare Lysosomal Storage Disease
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Not So Rare | Rare Disease Day February 28 2011

Not So Rare | Rare Disease Day February 28 2011

Rare Disease Day 2011

Rare Disease Day 2011Definition of Rare Disease: “A rare disease, also referred to as an orphan disease, is any disease that affects a small percentage of the population.” (wikipedia)

After all why would we refer to “rare disease” as rare when in fact we all are affected by disease? At some point in our life we have heard of someone or even have known a person who has suffered with a rare disease. To put into perspective what a rare disease means here are some statistics from WrongDiagnosis.com:

Prevalance of Rare diseases: about 25 million Americans (ORD); each disease less than 200,000 Americans by definition.

Prevalance Rate: approx 1 in 10 or 9.19% or 25 million people in USA [about data]

Incidence (annual) of Rare diseases: Less than 200,000 people in the USA by the definition of “rare disease” (in many cases much less)

Incidence Rate: approx 1 in 1,359 or 0.07% or 200,000 people in USA [about data]

Incidence extrapolations for USA for Rare diseases: 200,000 per year, 16,666 per month, 3,846 per week, 547 per day, 22 per hour, 0 per minute, 0 per second. Note: this extrapolation calculation uses the incidence statistic: Less than 200,000 people in the USA by the definition of “rare disease” (in many cases much less)

Read more at http://www.wrongdiagnosis.com/r/rare_diseases/stats.htm?ktrack=kcplink

This years focus for 2011 (http://www.rarediseaseday.org) is “Rare but Equal”. Here is more:

This year, EURORDIS member national alliances in 22 countries are combining their efforts to put the spotlight on “Rare Diseases and Health Inequalities.”

More specifically, in 2011, Rare Disease Day will seek to draw attention to the:

  • Gaps in health that exist for rare disease patients between and within countries in the EU
  • Gaps in health that exist for rare disease patients compared to other segments of society

The campaign will serve to advocate for:

  • Equal access for rare disease patients to health care and social services
  • Equal access to basic social rights: health, education, employment, housing
  • Equal access to orphan drugs and treatments

To learn more about how to get involved please visit Rare Disease Day 2011 website.  Below is a featured video on Rare Disease Day's YouTube channel featuring video of families suffering from Battens Disease. 🙁

[ To view: http://www.youtube.com/watch?v=AZa8kw3AHz4]

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