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July 19, 2022

TOPIC: Featured News, Advocacy, Get Involved

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

Posted at July 7, 2022 11:17 am by Valaree DonFrancesco

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 (HR 2163/S 464). This bill would help people with rare diseases access prescribed medications in a safe and timely manner, by ensuring step therapy is appropriately utilized. Too… Read More

July 12, 2022

TOPIC: Medical, Advocacy, Get Involved

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

Posted at July 7, 2022 08:00 am by Valaree DonFrancesco

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 nutritional intake. Despite medical necessity, many insurers do NOT cover medical nutrition. As a result, people with certain rare diseases and their families are left to face the extraordinary cost of their… Read More

July 7, 2022

TOPIC: Get Involved, RDCA-DAP

A Conversation on Drug Development for Rare Diseases

Posted at July 7, 2022 09:58 am by Mary Dunkle

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 there are more opportunities than ever before for patients, caregivers and patient organizations to play a key role in advancing R&D on rare diseases. This webinar will explore the basics… Read More

June 16, 2022

TOPIC: Advocacy, Get Involved

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

Posted at June 6, 2022 09:17 am by Rohan Narayanan

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. Media coverage has highlighted the stories of desperate parents driving hours from their homes to find formula or being forced to pay double or triple the usual cost… Read More

February 17, 2022

TOPIC: Press Releases, Get Involved, Rare Disease Day

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

Posted at February 2, 2022 08:36 am by Rohan Narayanan

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, Washington, DC – Leading up to Rare Disease Day on Monday, February 28, the National Organization for Rare Disorders (NORD) is highlighting the partners and supporters of this incredible international… Read More