Patient Worthy was a media partner at this year's NORD Living Rare, Living Stronger Patient and Family Forum. This is an annual event hosted by the National Organization for Rare…
Patient Worthy was a media partner at this year's NORD Living Rare, Living Stronger Patient and Family Forum. This is an annual event hosted by the National Organization for Rare…
Since its inception, the Clinical Data Interchange Standards Consortium (CDISC) has worked to advance data standards to the highest possible quality. These standards are then used to make data more…
NORD (the National Organization for Rare Disorders), through PR Newswire, recently announced the results of a new study that reveals the total number of generics, orphan products, and biosimilars currently…
If you’re a caregiver for a loved one with a rare disease, it’s not presumptive to assume you work tirelessly managing your loved one's busy appointment schedule, daily stretch routine,…
Every year for the past six years the National Organization for Rare Disorders (NORD) has published a State Report Card on the progress of rare disease policies in the states.…
Learning about rare diseases is one of the first steps towards advocacy. If you or a loved one are affected by cold agglutinin disease (CAD), you may want to get…
According to a story from Charcot-Marie-Tooth News, the National Organization for Rare Disorders (NORD) is beginning a new initiative that will be the focus of a public virtual meeting that…
Just around a month ago, the National Organization for Rare Disorders (NORD) offered a webinar on how to create a patient registry or start a nonprofit organization. NORD's webinar, part…
Telehealth is something that has become common during the coronavirus pandemic. It allows people to see their physicians without stepping out of the home, drastically lowering the risk of exposure.…
The 2020 Living Rare, Living Stronger NORD Patient and Family Forum July 18-20, 2020 Cleveland, OH This yearly conference for patients, their families, and researchers features a comprehensive content program…
As you know, COVID-19 has fundamentally changed our daily life. What began as a novel coronavirus in Wuhan, China has developed into a global pandemic: 9 million diagnosed cases…
According to a story from PR Newswire, the National Organization for Rare Disorders (NORD) has recently awarded a total of eleven new grant awards that will help fund essential research…
NORD has received thousands of phone calls and emails each week from concerned rare disease patients. They are asked for advice and how to decipher the myriad of contradictory information…
According to a story from PR Newswire, the National Organization for Rare Disorders (NORD) has just recently kicked off a COVID-19 Critical Relief Program. In alignment with its mission to…
Gene therapy has become a technological golden snitch: the end of an era for many genetic disorders if we can grasp the treatment’s potential. However, the technology comes with a…
According to a story from the Washington Post, rare diseases are a much more widely spread problem than you might think. There are at least 7,000 diseases that are considered…
The National Organization for Rare Disorders (NORD) is hosting its 2019 NORD Rare Diseases & Orphan Products Breakthrough Summit on October 21-22 in Washington, D.C. NORD is a great organization and…
The 2019 NORD Living Stronger Forum was held in Houston, TX, at the end of June. The event brought families and physicians from all over for educational presentations, community, and…
In honor of its 30th anniversary, the National Organization for Rare Disorders (NORD) has announced ten new grants as part of its Rare Disease Research Grant Program! NORD is the…
The 2019 Living Rare, Living Stronger NORD Patient & Family Forum featuring the Rare Impact Awards 2019 This rare disease patient forum brings together health professionals, physicians, patients, and medical…
Q&A with NORD Director of Membership, Debbie Drell, on the Living Rare, Living Stronger Patient and Family Forum, June 21-23 in Houston, Texas Which health care professionals would most benefit…
If drugs were measured by the quantity of approvals, orphan drugs would make quite a splash. Measured in more financial terms, however, they make up a much smaller portion of…
The final day of Rare Disease Week took place at the NIH Clinical Center last Thursday. Admission to the NIH was free, and participants had the chance to tour the…
When Kristen Smedley learned her son, Michael, was diagnosed with retinitis pigmentosa, she decided she wouldn't sit back and watch it take away from her son's life, she would take…
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