HomeRegisterLog inFollow us on facebookFollow us on twitterFollow us on youtubeFollow us on LinkedinFollow us on PintrestContact usFeedback


Share  | 
 

 IMPORTANT What is your rare disease experience?

View previous topic View next topic Go down 
AuthorMessage
Heidi
Admin1
Admin1
avatar


PostSubject: IMPORTANT What is your rare disease experience?   Wed Jan 09, 2013 6:26 pm

Genetic Alliance UK and Rare Disease UK and the Global Genes Project have decided to participate in an initiative being led by Shire Human Genetic Therapies that will help to identify and bring increased awareness to the myriad of issues facing the rare disease community.
Shire is surveying patients, carers, physicians, payors and thought leaders in the UK and the United States to identify and quantify some of the major health, psycho-social, societal and economic impacts of rare diseases. Survey results will be published in a Rare Disease Impact Report this year and we believe the findings from this Report will truly help guide future research and education for affected patients and their families.
What is your rare disease experience?

Please spare 10 minutes to give us a clearer understanding of the impacts of rare disease

Back to top Go down
http://www.ihaveiih.com
 

IMPORTANT What is your rare disease experience?

View previous topic View next topic Back to top 

 Similar topics

+
Page 1 of 1

Permissions in this forum:You cannot reply to topics in this forum
www.ihaveiih.com :: Group Information ::     :: NEWS & ANNOUNCEMENTS-
Jump to:  
DISCLAIMER This group is not managed by anyone in the medical profession, but by people who are either affected by, or are closely connected to IIH. Information provided on this site is meant to complement & not replace any advice or information from a health professional, users and members are reminded that medical professionals should always be consulted in all aspects of health needs.
Protected by Copyscape Web Copyright Protection Software
Top Disability Websites
Make a forum | © phpBB | Free forum support | Contact | Report an abuse | Free forum