Newsletter Headlines

Orphan Disease Update (ODU)

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Spring 2002 Headlines

Sample Article
Do you know the difference between a “Phase II” and “Phase III” clinical trial? This article explains the terminology and examines the risks and potential benefits of volunteering for clinical research.

Air Travel Since September 11th
People with disabilities are facing some extra challenges related to air travel as a result of heightened security measures.

Medical Update
Some patients with the rare disorder known as Stiff Person Syndrome have found relief from symptoms with intravenous immunoglobulin (IVIg).

Ask the Experts
What are some everyday things people can do to maintain good oral health for themselves of a loved one with special needs?

NORD Online
(NORD'S Organizational Newsletter) The NORD Online news bulletin is distributed several times a year to NORD member organizations.

November 2002 Headlines

Rare Disease Patients Face Access Crisis Under New Medicare Payment Rules
Unless Congress takes action before January 1, Medicare patients may have reduced access to some injectable and intravenous drugs for rare diseases at hospital outpatient centers.

Adverse Event in Gene Therapy
A child who had received gene therapy for X-Linked Severe Combined Immune Deficiency (SCID) later developed leukemia, leading to an emergency session of the FDA Biological Response Modifiers Committee to review protections for patients who participate in gene therapy research.

Congress Recesses Without FY 2003 Budget: Many Health Laws Still Pending The new fiscal year started on October 1, 2002, but the House and Senate still have not passed a budget or appropriations. For now, all government agencies will operate at FY 2002 funding levels.

Volunteering for Clinical Research

This recent NORD newsletter article examines the risks and benefits of volunteering for clinical research.
Click here.