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American People
 

September 2011 Council Currents

Extending Our Reach

Strategic Initiatives


NHC Unveils New Blog: A Different Normal

The National Health Council, in partnership with WebMD, is launching a new blog focusing on people with chronic diseases and disabilities – A Different Normal: Living with a Chronic Condition.

The website will feature guest bloggers from NHC’s member organizations, as well as chronic disease experts from WebMD. This site will provide

  • one of the largest, online health platforms for sharing information and raising awareness;
  • the flexibility of contributing content on an ad-hoc basis as fits a member organization’s mission; and
  • the opportunity to build online presence because the blog posts will be “tagged” and cross referenced on other WebMD pages.
 
NHC member patient advocacy organization and other non-profit member organizations interested in participating in this initiative should contact Nancy Hughes, NHC assistant vice president of communications and marketing, at nhughes@nhcouncil.org.
 


NHC Voice before Congress and Policy Makers

 

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Sharing the NHC Message and Knowledge with Others

 
  • On August 26, Boutin spoke on a panel at the Iowa Impact Medical Innovation Summit on innovation 
  • On August 24, Boutin spoke at the Epilepsy Foundation’s Organizational Review Committee meeting on organizational structuring
  • On July 28, Boutin spoke at a Grifols Public Policy Luncheon on the essential health benefits package
  • June 29, Boutin spoke at the Biotechnology International Organization Annual meeting on the MODDERN Cures Solution
  • June 22, Boutin spoke at the DIA annual meeting on a panel discussing regulatory affairs and sciences, quality, and good practice compliance
  • June 21, Boutin spoke at the DIA annual meeting on NHC’s original piece of legislation, the MODDERN Cures Solution
  • On June 19, Boutin spoke about health care reform at the DIA annual meeting on a panel about the voice of the patient in drug development
  • On June 7, Boutin spoke at the AIDS United’s Public Policy Council on the adoption of an essential health benefits package
 

Center for Information and Study on Clinical Research Participation (CISCRP)

 
CISCRP is a nonprofit organization dedicated to educating and informing the public, patients, medical and research communities, the media, and policy makers about clinical research and the role each party plays in the process.
 
CISCRP provides information on how patients can become informed clinical research participants. To visit their website click here. CISCRP also strives to help people locate ongoing clinical trials by supporting the website www.SearchClinicalTrials.org, an online tool created for the public in 2006.
 
CISCRP continues to organize and host the AWARE for All Program, A Clinical Research Day. The purpose of AWARE For All is to address the general public’s lack of fundamental knowledge about clinical research and to build greater awareness of the essential role research volunteers play in advancing medical science. If you have any questions regarding the Aware for All program, e-mail aware@ciscrp.org.
 
In addition, CISCRP produces a newsletter called Medical Heroes, which strives to educate and help those interested in clinical research understand the process, and honors research participants as medical heroes. Click here to get more information about CISCRP and read their latest newsletter.
 
The National Health Council is a proud supporter of the Center for Information and Study on Clinical Research Participation (CISCRP), and NHC President Myrl Weinberg is a member of the CISCRP Board of Advisors.
 
 

International Alliance of Patients’ Organizations (IAPO)

 
The International Alliance of Patients’ Organizations (IAPO) is a unique global alliance representing patients of all nationalities across all disease areas, and the NHC was instrumental in its creation and operations.
 
IAPO recently introduced the first in a series of case studies showcasing the work of its member organizations. These case studies provide an opportunity to share the experiences and achievements of its members and were chosen to reflect the geographical diversity of IAPO’s membership. They provide examples of a wide range of networking and policy work. To read a member case study click here.
 
In the summer of 2011, IAPO produced a Membership Guide, which provides information on the benefits of membership in IAPO for both current and prospective members. One of the benefits of being a member of IAPO is joining a global voice to advocate for access to better health care for every patient, regardless of nationality. To view the Membership Guide click here.
 
The International Alliance of Patients’ Organizations’ 5th Global Patients Congress will take place from March 17-19, 2012, at the Renaissance London Heathrow Hotel in the United Kingdom. The Congress will examine how patient-centered health care is achieved around the world. Participants will share, collect, and promote evidence of progress, including best practices, tools, resources, and case studies. The Congress will inform and support the development of advocacy and communication initiatives, and identify process and outcome indicators to measure the impact of patient-centred health care.
 
Every IAPO member organization has a guaranteed place in the Congress. Non-members are also welcome to attend as invited guests. To register for the Congress as a member or apply as a guest, click here.