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March 4, 2016

TOPIC: Patients & Members, Events

Apply Now: The Hole in the Wall Gang Camp Hosts First-Ever Rare Disease Family Camp

Posted at March 3, 2016 11:07 am by Jennifer Huron

holeinwallgang1NORD is proud to be working with The Hole in the Wall Gang Camp on the first-ever rare disease Family Camp here in Connecticut, June 2-5, 2016.

The Hole in the Wall Gang Camp opens its doors to children and families to ensure that every child, no matter their illness, can experience… Read More

February 29, 2016

TOPIC: Featured News, Patients & Members, Advocacy, Events, Patient Stories, Get Involved

Today is Rare Disease Day®

Posted at February 2, 2016 11:00 am by Jennifer Huron

rdd-social-profileOn this day, join the 30 million Americans who are making the voice of rare diseases heard. Your participation on Rare Disease Day means more awareness and hope for 1 in 10 people and families across the country, and others around the world.

Social Media – We’re Trending!

Together, let’s keep… Read More

February 4, 2016

TOPIC: Featured News, Patients & Members, Advocacy, Events, Get Involved

Rare Disease Day Video for 2016 Launched

Posted at February 2, 2016 04:21 pm by Lisa Sencen

On Wednesday, EURORDIS released the official, global video for 2016 Rare Disease Day. The video focuses on the special moments in the lives of people living with a rare disease. EURORDIS says, “everybody experiences those special moments with their relatives, children, friends and colleagues. For people living with or affected by a rare disease, the emotion during… Read More

January 18, 2016

TOPIC: Featured News, Events, Get Involved

Join the Running for Rare Team!

Posted at January 1, 2016 04:25 pm by Lisa Sencen

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

January 5, 2016

TOPIC: Featured News, Events, Get Involved

Register for the 2016 Rare Impact Awards

Posted at January 1, 2016 04:15 pm by Lisa Sencen

For more than 25 years, NORD has hosted an annual celebration to honor the year’s top achievements in rare diseases. In 2016, we are expanding the program and want to hear from you about the difference makers.

 

They are patients, caregivers, advocates, doctors, researchers, legislators, regulators,… Read More