The COVID-19 pandemic has caused great fears around drug shortages, the demand for personal protective equipment (PPE) and the status of clinical trial research for rare diseases. On September 16, NORD heard from… Read More
Today, Nebraska’s Medicaid expansion begins to take effect. This milestone—two years in the making—means that thousands more low-income people, including many who have a rare disease, now have access to health care coverage.
Nebraska is the latest in the long line of successful ballot initiatives to expand Medicaid. Since the… Read More
For Immediate Release
Major Groups Representing Millions of Patients Release Telehealth Principles
September 24, 2020 – A coalition of organizations representing millions of patients who live with serious, acute, and chronic conditions has released principles to guide policymakers seeking to ensure patients can continue… Read More
At the Head of the Herd is… Susan Thornton, CEO, Cutaneous Lymphoma Foundation
Susan advocates for those living with… Cutaneous lymphoma
Susan is located in… Philadelphia, PA.
You can connect with the CL Foundation on… Facebook or LinkedIn
How Susan got here… In addition to being the current CEO of the Cutaneous… Read More
Washington, DC, September 10, 2020–At a time when it is vitally important for the rare disease community to come together, the National Organization for Rare Disorders (NORD®) has announced a program of broad-ranging topics with speakers of unparalleled expertise for the 2020 NORD Rare Diseases… Read More
