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

Discover Why Ashwagandha Can Be Used for Stress and Anxiety

How Can You Benefit From Vitamin B12?

Calorie restriction promotes longevity through effects on mitochondrial network

A spoonful of oil: Fats and oils help to unlock full nutritional benefits of veggies, study suggests

Lower magnesium levels linked with increased mortality risk during up to 40 years of follow-up

Higher resveratrol dose linked to lower glucose levels in type 2 diabetics

What Is Bitter Orange?

Black Tea Is Great for Your Gut

Drug can dramatically reduce weight of people with obesity

Tryptophan's Possible Effects for Your Health

 
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
FibroSleep™ Ultra EPA  - Fish Oil Optimized Curcumin Longvida®


Article Comments



Be the first to comment on this article!

Post a Comment


 
Optimized Curcumin Longvida with Omega-3

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
FibroSleep™ FibroSleep™
The All-in-One Natural Sleep Aid
Energy NADH™ 12.5mg Energy NADH™ 12.5mg
Improve Energy & Cognitive Function
Vitamin D3 Extreme™ Vitamin D3 Extreme™
50,000 IU Vitamin D3 - Prescription Strength

Natural Remedies

Are You Obtaining the Proper Enzymes? Are You Obtaining the Proper Enzymes?
Coconut Oil - Healthy Gifts from the 'Tree of Life' Coconut Oil - Healthy Gifts from the 'Tree of Life'
Restoring Gut Health: How to Create a Firewall Against Toxins Entering the Gut Wall Restoring Gut Health: How to Create a Firewall Against Toxins Entering the Gut Wall
Natural Bladder Control, Go Less and Live More Natural Bladder Control, Go Less and Live More
Three-Step Strategy to Reverse Mitochondrial Aging Three-Step Strategy to Reverse Mitochondrial Aging

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

© 2017 ProHealth, Inc. All rights reserved. Pain Tracker App  |  Store  |  Customer Service  |  Guarantee  |  Privacy  |  Contact Us  |  Library  |  RSS  |  Site Map