PRP Alliance

PRP Alliance


Red balloon in a cloudy sky with red text saying “Advocacy”

We must rise above the noise level.

How Rare is Rare?
In the United States, a condition is considered “rare” if it affects fewer than 200,000 persons. International definitions of rare diseases vary. For example, in the UK, a disease is considered rare if it affects fewer than 50,000 citizens.

According to the National Institutes of Health there are over 7,000 rare diseases worldwide.  Of those, 591 are RARE SKIN diseases. With a prevalence of one in 400,000, pityriasis rubra pilaris is über rare

The PRP global community faces a daunting challenge. How do we rise above the above the noise level of more common dermatological conditions? How can PRP compete with atopic dermatitis and psoriasis for research dollars. Consider the patient populations in the U.S.

  • Atopic dermatitis: 32 million
  • Psoriasis: 7.5 million
  • PRP: 829

PRP-specific research projects undertaken over the past eight years can be counted on one hand. Recently, however, the PRP Alliance has had the opportunity to facilitate PRP-specific through Oregon Health and Science University.

The PRP Alliance is always seeking PRP Advocates — patients and caregivers who want to step up and get involved. Help us rise above the noise level. Learn more about PRP Advocacy. Contact Bill McCue.