Shifting the Paradigm in Rare Disease Patient Registries
Obstacles in rare disease research and orphan drug development continue to include low patient numbers, difficult recruitment, and insufficient scientific and medical knowledge such as lack of natural...
View ArticleBarretstown – a Serious Fun Camp!
When I arrived through the gates at the Barretstown camp, I was eager to meet my campers and fellow group of volunteers, caras, Gaelic for friend. What I didn’t know is what a lasting impact this camp,...
View ArticleRareConnect Team Hosts Successful International Meeting in Barcelona
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...
View ArticleWhat Does the 2013 Rare Disease Day Slogan Mean to You?
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...
View ArticleRareConnect launches 40th online community!
Over the last 3 years our team has worked hard to expand the RareConnect project and we are thrilled to announce we now have over 40 active global, disease specific communities with the launch of the...
View ArticleThe best part of my job.
I love my job, but the best part of my job is connecting rare disease patients. I was hired in June of 2011 to manage RareConnect- NORD’s global, online communities project with EURORDIS. About eight...
View ArticleOur Shared Vision for Rare Disease Day
As Rare Disease Day arrives in time zones around the world, you’ll be able to track its progress on a map on RareDiseaseDay.org hosted by EURORDIS and RareDiseaseDay.US hosted by NORD. This...
View ArticleA New Year: A New Resolution
By Lisa Phelps, NORD Director of Marketing & Community Relations Translational Genomics Research Institute 2014 With every New Year comes the resolve of individuals to better themselves in one or...
View ArticleSean Hepburn Ferrer Partners with NORD and EURORDIS to Help People Living...
Son of Actress Audrey Hepburn Donates Proceeds from New Book and Serves as Rare Disease Day® Ambassador 2015 on February 28 Washington D.C.—February 18, 2015—Actress Audrey Hepburn died of a rare type...
View ArticleRare Disease Day 2015 was the biggest and most impactful yet!
Rare Disease Day 2015 Recap & Highlight Reel The final 2015 State House Event took place yesterday. Now that all of the numbers are in, take a look at (and share!) this year’s highlight reel &...
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