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February 18, 2022

TOPIC: Industry, Rare Disease Day

Rare Disease Day 2022: Advancing the Conversation Around Health Equity

Posted at February 2, 2022 07:46 am by Rohan Narayanan

The following is a guest post from Tamar Thompson, Head of Corporate Affairs, Alexion.

Each year, on the last day of February, Alexion joins together with all those in the rare disease community to recognize Rare Disease Day, a global event led by EURORDIS that aims to raise awareness of rare diseases. This year, the theme for Rare Disease… Read More

April 8, 2021

TOPIC: Medical, Members, Industry

NORD Expands Gene Therapy Offerings Through New Online Resources

Posted at April 4, 2021 09:00 am by Lisa Sencen

For several years, the National Organization for Rare Disorders (NORD) has prioritized gene therapy education to advance knowledge and promote safe and effective clinical applications to reduce suffering from rare conditions. With this goal in mind, NORD is dedicated to producing a variety of educational resources for patients, caregivers, health care providers, and the public.

One of the newest resources… Read More

March 25, 2021

TOPIC: Press Releases, Featured News, Research, Industry

New Study Investigates the Number of Available Orphan Products, Generics and Biosimilars

Posted at March 3, 2021 09:29 am by Jennifer Huron

Washington, DC, March 25, 2021—The National Organization for Rare Disorders (NORD®) today announced the findings of a new study that details the number of orphan products, generics and biosimilars available to treat rare diseases. NORD commissioned Avalere to conduct the analysis to examine if laws and regulations are helping to bring… Read More

March 4, 2021

TOPIC: Press Releases, Featured News, Research, Industry

New Report Finds Medical Treatments for Rare Diseases Account for Only 11% of US Drug Spending; Nearly 80% of Orphan Products Treat Rare Diseases Exclusively

Posted at March 3, 2021 11:35 am by Jennifer Huron

Washington, DC, March 4, 2021—As US policymakers consider options to address rising health care costs while still meeting the needs of patients, a new report from IQVIA has found that rare diseases account for just 11% of medical invoice spending in the United States, and 79% of all orphan products treat only rare diseases. The report also highlights… Read More

February 26, 2021

TOPIC: Featured News, Industry, Rare Disease Day, #NORDintheNews

NORD’s Pamela Gavin Interviewed on Health Equity by PharmaBoardroom for Rare Disease Day

Posted at February 2, 2021 01:16 pm by Valaree DonFrancesco

PharmaBoardroom, an international pharmaceutical industry media outlet providing industry trends, news and reports geared to senior professionals, recently interviewed Pamela Gavin on the importance of health equity and what NORD is doing towards achieving equity for the rare community in the United States.

The interview can be read in its entirety here.