NORD Launches New Blog for Entire Rare Disease Community
Topics to include public policy, research news, patient experiences, and innovative ways to drive progress
WASHINGTON DC, OCTOBER 18, 2012-----The National Organization for Rare Disorders (NORD) has launched a new blog to cover topics of interest to the entire rare disease community. Called "Rare Disease Dialog", it can be accessed from NORD's home page (www.rarediseases.org) or directly at http://blog.rarediseases.org.
"We'll cover 'hard news' related to developments on Capitol Hill as well as the softer side of the news, with personal reflections from members of NORD's staff and guest bloggers about their experiences with rare diseases," said NORD President and CEO Peter L. Saltonstall.
"Everyone is welcome to post comments on the blog," he added. "While basic guidelines are in place to ensure a civil, respectful discussion, otherwise no topic is off-limits and all comments will add to the richness of the dialogue."
New posts will be added several times a week, and visitors will be encouraged to comment on posts. Topics to be covered in upcoming posts include:
WASHINGTON DC, OCTOBER 18, 2012-----The National Organization for Rare Disorders (NORD) has launched a new blog to cover topics of interest to the entire rare disease community. Called "Rare Disease Dialog", it can be accessed from NORD's home page (www.rarediseases.org) or directly at http://blog.rarediseases.org.
"We'll cover 'hard news' related to developments on Capitol Hill as well as the softer side of the news, with personal reflections from members of NORD's staff and guest bloggers about their experiences with rare diseases," said NORD President and CEO Peter L. Saltonstall.
"Everyone is welcome to post comments on the blog," he added. "While basic guidelines are in place to ensure a civil, respectful discussion, otherwise no topic is off-limits and all comments will add to the richness of the dialogue."
New posts will be added several times a week, and visitors will be encouraged to comment on posts. Topics to be covered in upcoming posts include:
- the looming "budget cliff" and how it may impact rare disease patients
- implementation of insurance reforms in the Affordable Care Act and rare disease provisions in the FDA Safety and Innovation Act
- innovative work by patient organizations and others to encourage the development of treatments for rare diseases
- how to get involved in Rare Disease Day 2013, which NORD sponsors nationally
