Tag: patient stories | Rare Disease Dialog Blog

Connect with NORD

Feb. 27, 2013

TOPIC: Patients & Members

Living With A Rare Disease

Posted at February 27, 2013 10:35 pm by Paul Bruno

We know the math:

In the U.S., a disease is rare if it affects fewer than 200,000 people.
There are over 7,000 rare diseases.
Taken together, these rare diseases affect between 25 and 30 million Americans.

In other words, nearly 1 in 10 of us have a rare disease. read more >

TAGS: narcolepsy, NORD, patient stories, patients, Paul Bruno, Rare Disease Day

Feb. 26, 2013

TOPIC: Patients & Members

What Does the 2013 Rare Disease Day Slogan Mean to You?

Posted at February 26, 2013 9:27 pm by Tai Spargo

This year’s theme for Rare Disease Day is “Rare Disorders Without Borders.” It shows that rare diseases are a global issue, and if we work together in solidarity, we can create a better world for patients. Recently, we asked individuals on the Rare Disease Day US Facebook page what “Rare Disorders Without Borders” meant to them and we were really touched by some of the answers. read more >

TAGS: collaboration, eurordis, NORD, patient stories, patients, Rare Disease Day, Rare Diseases, Tai Spargo

Dec. 26, 2012

TOPIC: Patients & Members

RareConnect Team Hosts Successful International Meeting in Barcelona

Posted at December 26, 2012 2:39 pm by Alexandra Freitas

The first week of December marked the third international meeting of the RareConnect team. I joined my fellow community managers in sunny Barcelona, Spain to meet and plan 2013 initiatives for RareConnect. read more >

TAGS: Alexandra Freitas, eurordis, Global Advocacy, NORD, patient organizations, patient stories, patients, Rare Diseases, Rare Diseases Europe, rareconnect, social media

Oct. 22, 2012

TOPIC: Patients & Members

This is Why We Do This- Patients at NORD/ DIA Conference

Posted at October 22, 2012 3:16 pm by Tai Spargo

From Left to Right: Mary Dunkle- NORD, Christy Greeley- Cystinosis Research Network, Ron Bartek-Friedrich’s Ataxia Research Alliance, Jeff Wuchich- Alternating Hemiplegia of Childhood Foundation, Mirta Avila Santos, American Behcet’s Disease Association (ABDA), Sandy McElgunn- ABDA, Megan O’Boyle- Phelan-McDermid Syndrome Foundation

Within the first hour of the Annual DIA-NORD U.S. Conference on Rare Diseases & Orphan Products, NORD and DIA hosted a panel of six patient advocates to help remind everyone that patients are at the heart of everything we will be talking about in the next few days.