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October 23, 2013

TOPIC: Advocacy, Featured News, Medical, Patients & Members

30 Years After the Orphan Drug Act: It Still Takes Too Long for People with Rare Diseases to Get an Accurate Diagnosis

Posted by Mary Dunkle

 

NORD recently posted the following question on its Facebook page: How long did it take you or a loved one to get an accurate diagnosis?

We were stunned at the response. Within the first few hours, we got 200 replies and 20% of those who responded had waited 10 years or longer to get an accurate… Read More

August 29, 2013

TOPIC: Advocacy, Featured News, Patients & Members

Enrollment in Your Health Insurance Marketplace

Posted by Paul Melmeyer

 

It seems like just yesterday the Supreme Court handed down its controversial decision to uphold much of President Obama’s monumental healthcare reform bill, the Affordable Care Act. But with just a little over a month until the health insurance marketplaces open for enrollment on October 1st, it is now more important than ever to understand how healthcare reform affects… Read More

August 19, 2013

TOPIC: Patients & Members

The Power of Words

Posted by

Quotes, mottos, and poems can be a source of motivation for many people.  Speeches are often capped off with a quote from a retired world leader, actress, writer, or extraordinary mind. Usually we don’t know the context in which these words were spoken, but being removed from the quotes gives us some flexibility in our personal interpretation. Read More

August 1, 2013

TOPIC: Medical, Patients & Members, Research

Informed Consent in Biobank Research

Posted by Marsha Lanes

Genetic biobanks, storage facilities for DNA, genetic data and tissue samples, are becoming more prevalent in the rare disease community.   The information and samples can be made available to approved researchers for clinical studies, but unlike clinical trials, there is usually no personal benefit or follow-up provided to participants.  (more…)Read More