NIH Clinical Trials and You

New Web Site Launched

The NIH announced the launch of a new Web site titled NIH Clinical Research Trials and You, geared for those considering participating in a clinical trial.

According to the press release announcing the new site, "Clinical trials are essential for identifying and understanding ways to prevent, diagnose, and treat disease. Research has shown that among the greatest challenges to recruitment of volunteers is the lack of general knowledge about what trials involve, where they are carried out, and who may participate."

This new Web site aims to help potential participants learn about clinical trials and make an informed decision about whether they should take part. The site includes sections on "The Basics," "Volunteer Stories," "Researcher Stories," "Finding a Trial." Also, "For Health Care Providers," "Educational Resources," a glossary of terms, and much more.

Visit the NNPDF's Clinical Trials and Research Studies page for a link to the new NIH site and to learn more.

International Niemann-Pick Disease Alliance Meets

International Niemann-Pick Disease Alliance
Second NPD International Advocacy Meeting Held in Spain

The International Niemann-Pick Disease Alliance (INPDA) met November 13-14, in Toledo, Spain, to share updates and to reinforce and develop worldwide networks.

Representatives from patient support groups representing 11 countries (including those from the NNPDF and CCNNPDF) and pharmaceutical companies, along with clinicians and scientists from around the world, were in attendance.

Goals and objectives for the INPDA were set for the next two years with an emphasis on collaboration in family services and research.

The INPDA was established in 2009 to provide a forum for the exchange of information, experience and knowledge for the purpose of accelerating progress in the fight against Niemann-Pick Disease.

To see photos from the INPDA meeting, visit the NNPDF's NewsLine page.