Rare New Jersey Celebrates World Rare Disease Day

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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 to rare diseases as an important public health issue that cannot be ignored. Patients and advocates who support them will […]

New Coalition Draws Attention to Plight of Those with Rare Disease

Julie Raskin

Attitudes, costs, finding effective treatments and tracking down specialists among obstacles New Jersey pharmaceutical companies, healthcare providers and patient advocates are working together– in a newly-formed group called NJ Rare– to solve the vexing challenge of finding treatments for diseases that affect relatively few people […]

Recognizing a Rare Disease Awareness Pioneer – Jack Klugman

Jack Klugman, best known as Felix Ungar in the 1970s sitcom The Odd Couple, brought much needed attention to orphan drugs and rare conditions.

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 the passing of actor Jack Klugman at the age of 90. Best known for his portrayal of Oscar Madison, the […]

Help Support Research for Creutzfeldt Jakob Disease

A race to find a cure against Cruetzfeldt 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 forever changed by Creutzfeldt-Jakob disease (CJD). This disease is a degenerative neurological disorder (brain disease) that is incurable. Currently, not only […]

Social Security Commissioner to Announce Expansion of Compassionate Allowances List

The Compassionate Allowance List to be announced on Thursday, December 6, 2012.

In their recent Advocacy Alert, the National Organization for Rare Disorders (NORD) encourages patient organization representatives to attend the following announcement: NORD President and CEO Peter L. Saltonstall to Speak at Capitol Hill Event Michael J. Astrue, Commissioner of Social Security, will announce the expansion […]

SK5K Race of Hope in Loving Memory of Sandra Who Passed Away Three Days After Being Diagnosed with Creutzfeldt-Jakob Disease

Sandra Kelly is pictured here prior to her diagnosis with Creutzfeldt-Jakob Disease.  In loving memory of her mother, Jennifer is hosting a 5k walk in her honor.

My mother, Sandra Kelly, was taken by sporadic Creutzfeldt-Jakob disease on March 24, 2008. In late February of 2008, she began having symptoms similar to early onset Dementia. However, the symptoms appeared all at once and progressed rapidly, thereby ruling out this diagnosis. For the […]

The Tour de France and Testicular Cancer

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Testicular cancer is rare, and bone marrow transplant services are difficult to access for advanced stage tumors.