Scroll
To Top

January 16, 2019

TOPIC: Advocacy, Events, Featured News, Patients & Members, Press Releases, Rare Disease Day, Sticky Posts for Homepage

NORD Issues New Rare Disease DayⓇ Rallying Cry: Show Your Stripes™!

Posted at January 1, 2019 10:45 am by Christina Jensen

Washington, DC, January 16, 2019–The National Organization for Rare Disorders (NORD)Ⓡ, the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has announced a new campaign for Rare Disease Day centering on three simple words: Show Your Stripes, with a call to action for people to literally and figuratively “show their stripes” in… Read More

December 3, 2018

TOPIC: Featured News, Patients & Members, Press Releases, Sticky Posts for Homepage

National Gathering of the Rare Disease Community and Health Professionals Launched with 2019 Living Rare, Living Stronger | NORD Patient & Family Forum Featuring the Rare Impact Awards

Posted at December 12, 2018 10:46 am by Laura Mullen

Danbury, CT, December 3, 2018 – The National Organization for Rare Disorders (NORD) has announced a meeting for patients, caregivers and the medical community. The 2019 Living Rare, Living Stronger NORD Patient & Family Forum will take place June 21 – 23 in Houston, Texas. In addition, the 2019 Rare Impact Awards… Read More

November 19, 2018

TOPIC: Advocacy, Featured News, Get Involved, Sticky Posts for Homepage

Orphan Drug Act Resolution Introduced in Congress

Posted at November 11, 2018 10:22 am by Christina Jensen

Senator Hatch and Representatives Lance and Butterfield introduced a resolution that heralds the success of the Orphan Drug Act (ODA) and calls for continued support of the legislation.

This year marks the 35th anniversary for the ODA. That means 35 years of increased hope and treatments for the rare disease community. Prior to the ODA, there were only 34 therapies… Read More

January 18, 2016

TOPIC: Events, Featured News, Get Involved, Sticky Posts for Homepage

Join the Running for Rare Team!

Posted at January 1, 2016 04:25 pm by Christina Jensen

For the ninth consecutive year, runners will join together to help raise awareness for rare diseases while fundraising to support the NORD Undiagnosed Diseases Network (UDN) Patient Assistance Program.

The 2016 team is looking for runners to join the Boston, Providence Marathon and half Marathon teams, as well as RARE Community Partners. When you join the Running for Rare Team,… Read More