The National Organization for Rare Disorders (NORD)®, a leading independent, non-profit organization committed to theidentification, treatment, and cure of rare disorders and official U.S. sponsor of Rare Disease Day® on February 28, announces a new social media campaign, #1in10, to raise awareness for the 1 in 10 Americans living with a rare disease.
“It’s astounding that there are just as many Americans living with a rare disease as there are people who are left-handed,” said Lisa Phelps, director of marketing and community relations at NORD. “We are launching this campaign for everyone who has a rare disease, their families, caregivers, nurses and doctors to help raise important awareness for this major public health issue and the need for safe, new treatments.”
Soft drink and fast food companies often make children the primary targets of their advertising. These companies know that people frequently establish consumption habits at an impressionable young age that extend well into adulthood. Such a long-term strategy isn’t just smart business. It is essential to the survival of the brand.
As a second-year medical student with two younger brothers who have a rare genetic disease – ataxia telangiectasia – I think the rare disease community can learn and benefit from the strategies of these corporations. read more >
In a new interview with Medscape, Marshall L. Summar, chief of genetics and metabolism at Children’s National Medical Center in Washington, D.C. and NORD board member, talks about the importance of patient registries for rare diseases, and the role that NORD’s patient registry program has in helping patients and educating doctors. According to Dr. Summar, registries can accelerate the process of treatment and help physicians address the big knowledge gap about what happens in the day-to-day lives of patients. read more >
The cost of orphan drugs, and whether it is approaching a level where sustainability may be an issue, is a topic of intense interest in the rare disease community. However, an important new study reported at the recent American Society of Hematology meeting suggests that the overall budget impact of orphan drugs may be smaller than many people would assume. read more >
ESPN anchor Stuart Scott passed away last night at just 49 years old after his 7-plus year battle with appendix cancer. Mostly Scott’s passing makes me feel for his daughters, his family, his friends, and his colleagues. This is their time to reflect and remember him. However, I also think that his public presence makes it seem like we all knew him, and I think he taught us all something by how he handled his illness.
I didn’t know Stuart Scott. But I feel a special kinship with him because the broad outlines of his story and mine are remarkably similar. We were both diagnosed with appendix cancer in November 2007 – I went to the ER on the Friday after Thanksgiving and he had an emergency appendectomy the following Monday (while I was still in the hospital being diagnosed). We both had two recurrences – mine in 2009 and 2010, and his in 2011 and 2013, with multiple major surgeries as our rewards. We both went to work while our bodies absorbed incredible amounts of energy-depriving chemotherapy. We both fought with everything we had to live for our kids. So I didn’t know Stuart Scott, but I know something about what he went through in fighting appendix cancer.
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
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