ProHealth health Vitamin and Natural Supplement Store and Health
Home  |  Log In  |  My Account  |  View Cart  View Your ProHealth Vitamin and Supplement Shopping Cart
800-366-6056  |  Contact Us  |  Help
Facebook Google Plus
Fibromyalgia  Chronic Fatigue Syndrome & M.E.  Lyme Disease  Natural Wellness  Supplement News  Forums  Our Story
Store     Brands   |   A-Z Index   |   Best Sellers   |   New Products   |   Deals & Specials   |   Under $10   |   SmartSavings Club

Trending News

SURVEY: Cognitive Impairment II

Top 3 Nutrients to Detox the Liver and Soothe Digestion

Natural Bladder Control, Go Less and Live More

Vital Molecule Increases Cellular Energy and Improves Cognitive Function

Top Vitamin and Mineral Deficiencies — Are You at Risk?

How Pomegranate May Protect Against Cancer

Omega Fix for Obesity: How the Right Fats Fight Fat

Trimming the spare tire: Canola oil may cut belly fat

The Onion: Cancer Fighter and Food Preserver

Fighting Heartburn and Gerd Naturally – And Safely!

 
Print Page
Email Article

Advocacy groups as research organizations: The PXE International example

  [ 179 votes ]   [ Discuss This Article ]
By Sharon F. Terry, et al. • www.ProHealth.com • February 7, 2007


Journal: Nature Reviews Genetics. 8, 157-164 (February 2007).

Authors and affiliation: Sharon F. Terry, Patrick F. Terry, Katherine A. Rauen, Jouni Uitto, Lionel G. Bercovitch. Genetic Alliance, PXE International and Genetic Alliance BioBank, Washington DC. [E-mail: sterry@geneticalliance.org ]

DOI:10.1038/nrg1991

Advocacy organizations for genetic diseases are increasingly becoming involved in biomedical research, particularly translational research, in order to meet the needs of the individuals that they serve.

PXE International, an advocacy organization for the disease pseudoxanthoma elasticum, provides an example of how research can be accelerated by these groups.

It has adopted methods that were pioneered by other advocacy organizations, and has integrated these along with new approaches into franchisable elements.

The model has been followed for other conditions and has led to the establishment of a common infrastructure to enable advocacy groups to initiate, conduct, and accelerate research.





Post a Comment

Featured Products From the ProHealth Store
Mitochondria Ignite™ with NT Factor® Optimized Curcumin Longvida® FibroSleep™


Article Comments



Be the first to comment on this article!

Post a Comment


 
Natural Pain Relief Supplements

Featured Products

Mitochondria Ignite™ with NT Factor® Mitochondria Ignite™ with NT Factor®
Reduce Fatigue up to 45%
Ultra EPA  - Fish Oil Ultra EPA - Fish Oil
Ultra concentrated source of essential fish oils
Ultra ATP+, Double Strength Ultra ATP+, Double Strength
Get energized with malic acid & magnesium
Energy NADH™ 12.5mg Energy NADH™ 12.5mg
Improve Energy & Cognitive Function
Optimized Curcumin Longvida® Optimized Curcumin Longvida®
Supports Cognition, Memory & Overall Health

Natural Remedies

Three-Step Strategy to Reverse Mitochondrial Aging Three-Step Strategy to Reverse Mitochondrial Aging
Secret Nutrient for Radiant Skin Secret Nutrient for Radiant Skin
Studies Show that Magnesium L-threonate Improves Brain Plasticity, Leading to Direct and Significant Improvements in Memory, Learning, and Cognition.3 Studies Show that Magnesium L-threonate Improves Brain Plasticity, Leading to Direct and Significant Improvements in Memory, Learning, and Cognition.3
Itching to Find Dry Skin Relief? Itching to Find Dry Skin Relief?
Quercetin: Natural Support for Allergy & Inflammation Relief and More Quercetin: Natural Support for Allergy & Inflammation Relief and More

CONTACT US
ProHealth, Inc.
555 Maple Ave
Carpinteria, CA 93013
(800) 366-6056  |  Email

· Become a Wholesaler
· Vendor Inquiries
· Affiliate Program
SHOP WITH CONFIDENCE
Credit Card Processing
SUBSCRIBE TO OUR NEWSLETTERS
Get the latest news about Fibromyalgia, M.E/Chronic Fatigue Syndrome, Lyme Disease and Natural Wellness

CONNECT WITH US ProHealth on Facebook  ProHealth on Twitter  ProHealth on Pinterest  ProHealth on Google Plus

© 2016 ProHealth, Inc. All rights reserved. Pain Tracker App  |  Store  |  Customer Service  |  Guarantee  |  Privacy  |  Contact Us  |  Library  |  RSS  |  Site Map