Tag: _Policy

A total of 16 posts are filed under _Policy
unnamed-33
Jill Ziegler Talks How To Go From Enthusiast to Advocate
Either as a patient, a parent or a caregiver–you are in the rare disease community. You know how to rely on others and how to lend… Continue Reading
KELF_Logo_layers
Action Alert: Congress Nearing Vote on “Open Act”–We Need Your Voice!
Congress is close to voting on a historic bill, the 21st Century Cures Act (HR 6), that provides incentives to develop treatments for… Continue Reading
21st Century Cures
A Message From Global Genes About 21st Century Cures
Yesterday’s important milestone gave rare disease patient advocates a reason to celebrate.  The House Energy and Commerce Committee… Continue Reading
who-logo1
Austria Adopts National Action Plan for Rare Diseases
Austria has adopted its national action plan for rare diseases. The goal of the action plan is to improve the lives of all rare disease… Continue Reading
RARECast-jonathan-johnson
RARECAST: Utah Patients Win Right to Try
Last month Utah Governor Gary Herbert signed into law the Right to Try Act, which provides terminally ill patients access to experimental… Continue Reading
Photos courtesy of Josh Berg Photography
ACTION ALERT: Dillon’s Law – Helping Medically Fragile Families in America
Dillon’s Law would require Medicaid, Medicare, and private insurance companies to allow medically fragile people to travel with a nurse… Continue Reading
093014-Photo-JointTransCommerceHearing3-PB
Legislation Introduced in House to Provide Incentives for Rare Disease Drug Development
On Nov. 20, 2014, Rep. Gus Bilirakis (R-FL) introduced the “Orphan Product Extensions Now Accelerating Cures and Treatments Act of 2014”… Continue Reading