More News....
The Physician’s Guide is now available on line. Click here to read
HDSA is partnering with the Euro-HD Network in an international survey to understand the social, economic and medical challenges caregivers and people with HD face daily.
Two confidential surveys are available:
Click here for Caregiver survey
Click here for Patient survey
HDSA Care Coordination Portal now provides caregivers the ability to reach out to their friends and families as needed for concrete and emotional support at no charge: www.hdsa.org/carecoordination
Check out www.predict-hd.net for info on the Predict-HD study—there is also a YouTube channel that can be found by searching for “PREDICT-HD”.
You and your doctor can receive a complimentary copy of “A Physician’s Guide to the Management of HD 3rd Edition; send the name, address and phone number of your primary care dcoctor and neurologist as well as your name, address, and phone number to Anita Paul Mark at HDSA or email her at amarkpaul@hdsa.org or fax (212)239-3430
Interesting New Drug Research on kinase inhibitors: Click here to read
A New Documentary about a son who brings
his father who is experiencing late-stage HD on a motorcycle journey through India; it was recently profiled on NPR’s “With Good Reason”:
Click here to read
Recent Wall Street Journal Article:
Click here to read
Recent ABC News Story about new tests designed to detect HD in the brain long before symptoms appear: Click here to read
Interesting Media Project: Click here to read
Enroll-HD - A Prospective Registry Study in a Global HD Cohort
from: CHDI Foundation
CHDI Foundation Inc., today announced the start of a planning and consultation process to combine the existing REGISTRY and COHORT longitudinal clinical observation studies of Huntington's disease (HD) into a worldwide initiative called Enroll-HD: Click here to read
Facing Life with a Lethal Gene
from: The New York Times
The story of Katie Moser, licensed occupational therapist, current spokesperson for Lundbeck pharmaceuticals, and former president of the National Youth Alliance. Click here to read
Battling Huntington's Disease
from: The Economist
NBC war reporter Charles Sabine discusses the trials of living with HD. Click here to read
'Real Need' for Huntington's Research
from: the BBC
An audio interview with Columbia's Professor Nancy Wexler on new findings on Huntington's disease Click here to listen
Massive Underestimation in the Prevalence of Huntington's Disease
in the UK Population
from: The PRNewswire, London, June 30, 2010
Press conference at the Science Media Center on Albemarle Street, London W1 Click here to read
