Tag: national organization for rare disorders

A total of 9 posts are filed under national organization for rare disorders
RARECast: Why Natural History Studies Should Matter to Rare Disease Patients
Peroxisomal disorders are a group of rare and heterogeneous metabolic diseases. Earlier this year, the National Organization for Rare… Continue Reading
Rare New Jersey Celebrates World Rare Disease Day
Please join Rare New Jersey for an hour of learning and discussion in honor of Rare Disease Day, a global, annual event that draws attention… Continue Reading
New Coalition Draws Attention to Plight of Those with Rare Disease
Attitudes, costs, finding effective treatments and tracking down specialists among obstacles New Jersey pharmaceutical companies, healthcare… Continue Reading
Recognizing a Rare Disease Awareness Pioneer – Jack Klugman
It’s not often that we posthumously learn something new and meaningful about a Hollywood star, but such was the case for me this week with… Continue Reading
Help Support Research for Creutzfeldt Jakob Disease
Organization: SK5K Race of Hope for CJD Submitted by: Jennifer Johnson My name is Jennifer Kelly Johnson, and in early 2008 my world was… Continue Reading
Social Security Commissioner to Announce Expansion of Compassionate Allowances List
In their recent Advocacy Alert, the National Organization for Rare Disorders (NORD) encourages patient organization representatives to… Continue Reading
SK5K Race of Hope in Loving Memory of Sandra Who Passed Away Three Days After Being Diagnosed with Creutzfeldt-Jakob Disease
My mother, Sandra Kelly, was taken by sporadic Creutzfeldt-Jakob disease on March 24, 2008. In late February of 2008, she began having… Continue Reading