PCD Foundation News Flash
PCD Featured in NIH Research Publication
Phoenix, AZ
Nov 30, 2006 Michael Knowles, MD, main
investigator for the NIH PCD study underway at UNC, and
a young PCD patient are featured on the cover of the
Fall 06 edition of the NCRR Reporter, a publication of
the National Center for Research Resources (NCRR).
Inside, an excellent article titled "The Burden of Being
Unique," focuses on the Rare Diseases Clinical Research
Network, highlighting advances in PCD research.
Research into rare diseases has been stymied by lack
of resources, funds and actual patients for study. As a
result, individuals with rare diseases (diseases
affecting less than 200,000 people in the United States)
have been left with little hope for advances in
treatments or cures. There are over 6,800 rare diseases
affecting more than 25,000,000 Americans. These numbers,
while compelling, tell only part of the story. Every
family affected by a rare disorder has faced physical,
financial and emotional turmoil. Most have had to accept
substandard diagnosis and care due to lack of basic
information about their disease. In short, the toll on
families is enormous.
"NCRR Reporter" Highlights the Rare Diseases
Clinical Research Network
In 1991, I was told that there would never be research
into primary ciliary dyskinesia (PCD). The condition was
extremely rare and there was little commercial appeal to
entice corporate research dollars. The PCD Foundation
was created to address this problem. We were very
excited to participate in this novel and exciting
program to enhance the quality and quantity of research
opportunities available to rare diseases. It is an
important advancement and an excellent model for future
research endeavors. 15 years ago I was told “no.” Today
we have the premiere research institute in the world
saying “yes” to research in rare disorders.
Click here for article...
About The PCD Foundation
The PCD Foundation is a 501(c)(3) tax-exempt
organization incorporated in the State of Minnesota. The
PCD Foundation is dedicated to increasing awareness of
inherited ciliary disorders and to providing education
and advocacy for affected individuals and their
caregivers.
Website:
http://www.pcdfoundation.org
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PCD Foundation
Michele Manion
phone: 623-215-2032
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