Rare Disease News

Giving Rare Diseases a Voice: 5 ways to make your voice as a patient advocate heard in 2023

Published January 31, 2023 by NORD

Categorized in -

By Karin Hoelzer Rare disease patients and caregivers often ask me whether they should really engage in health policy. Is it really worth the trouble? In short, the answer is …

Continue reading “Giving Rare Diseases a Voice: 5 ways to make your voice as a patient advocate heard in 2023”

Help for rare disease patients impacted by recent 2022 hurricanes

Published October 6, 2022 by NORD

Categorized in -

NORD’s Hurricane Emergency Relief Fund provides limited financial assistance to those with a rare disease who are victims of natural disasters. Emergency relief funds may be requested once per household/per …

Continue reading “Help for rare disease patients impacted by recent 2022 hurricanes”

Take Action on July 19: Help End Harmful Step Therapy Policies By Urging Congress to Support the Safe Step Act

Published July 19, 2022 by NORD

Categorized in -

On Tuesday, July 19, join rare disease advocates and coalition partners across the nation for a social media day of action to urge Congress to pass the Safe Step Act …

Continue reading “Take Action on July 19: Help End Harmful Step Therapy Policies By Urging Congress to Support the Safe Step Act”

Take Action: Share Your Story with the White House and Help Explain Why Medical Nutrition Is Critically Important

Published July 12, 2022 by NORD

Categorized in -

Many people with rare diseases require medical nutrition prescribed by a healthcare provider to prevent permanent disability and mortality, allow for normal growth in children and adults, or provide adequate …

Continue reading “Take Action: Share Your Story with the White House and Help Explain Why Medical Nutrition Is Critically Important”

A Conversation on Drug Development for Rare Diseases

Published July 7, 2022 by NORD

Categorized in -

Explore the five steps in drug development and discover new opportunities to get involved More than 95% of rare disease patients lack an FDA-approved treatment for their condition. However, today …

Continue reading “A Conversation on Drug Development for Rare Diseases”

Baby Formula Shortage Highlights Need for Congress to Act on Medical Nutrition Equity

Published June 16, 2022 by NORD

Categorized in -

The current baby formula shortage has rocked the lives of American families, as parents and caregivers across the country struggle to find the formula they need to feed their children. …

Continue reading “Baby Formula Shortage Highlights Need for Congress to Act on Medical Nutrition Equity”

Rare Disease Advocates and Supporters Share the Importance of Raising Awareness Ahead of Rare Disease Day 2022

Published February 17, 2022 by NORD

Categorized in -

Organizations and individuals from across the country are partnering with NORD to help make a difference for rare disease patients and families on Rare Disease Day 2022 February 17, 2022, …

Continue reading “Rare Disease Advocates and Supporters Share the Importance of Raising Awareness Ahead of Rare Disease Day 2022”

Request for Proposal: NORD’s 2021 Annual Report

Published February 9, 2022 by NORD

Categorized in -

Get Involved

Request for Proposal (RFP) Copy and design for NORD’s 2021 Annual Report BACKGROUND The National Organization for Rare Disorders® (NORD), a 501(c)(3) organization, is a patient advocacy organization dedicated to …

Continue reading “Request for Proposal: NORD’s 2021 Annual Report”

How to Light Up for Rare – Rare Disease Day 2022

Published December 14, 2021 by NORD

Categorized in -

Rare Disease Day is a day of awareness for the over 7,000 rare diseases that impact over 300 million people globally! As the US sponsor for Rare Disease Day, NORD is leading the call to light up …

Continue reading “How to Light Up for Rare – Rare Disease Day 2022”

With the Build Back Better Act, Congress Threatens Progress for Americans with Rare Diseases

Published November 18, 2021 by NORD

Categorized in -

As Congress continues to debate the policies to include in the final version of the Build Back Better Act, the House of Representatives has inexplicably chosen to take aim at …

Continue reading “With the Build Back Better Act, Congress Threatens Progress for Americans with Rare Diseases”