Editor's Note: Patient Worthy is honored to share this article from our friends at Courageous Parents Network. Parents of well children regularly receive anticipatory guidance–proactive communication about what’s coming in…
Not everyone who stands up for children’s health in Washington, DC, wears a suit or carries a briefcase. Sometimes, the most powerful advocates are the ones who have experienced the…
This year, the National Organization for Rare Disorders (NORD) held its annual Breakthrough Summit from October 16-17 in Washington, D.C. During the Breakthrough Summit, NORD celebrated its 40th anniversary and…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
Receiving a diagnosis can be difficult, and when you add into the equation that it’s for a rare disease, it can be a very lonely and isolating time. There is…
For as long as she can remember, Tiffany Williams wanted to make a difference, especially in the healthcare field. She earned her doctorate degree and began working as a…
Don't forget to check out Parts 1 and 2 of our interview, where we discussed APFED, eosinophilic esophagitis (EOE), and Lori's diagnostic process. Today, in the final portion of the interview, we're…
If you're just joining us, don't forget to take a look at Part 1 of this interview. In Part 1, we discussed Lori and Mary Jo Strobel, what eosinophilic esophagitis (EOE) is,…
When you think about a visit to the dentist, it may – at first – seem innocuous, something that you need to take care of for your health. But for…
According to a recent article, the family of a young boy from Australia who is diagnosed with the rare genetic disease mucopolysacchariodosis type 1 (MPS 1) is sharing his story to…
According to a recent article, a storytelling and research hub has been launched by the nonprofit Good Days to create a platform for those in the chronic and rare disease…
When J.B. Lacombe's son was born, he showed signs of jaundice. Jaundice, caused by extra bilirubin in the blood, results in the yellowing of the skin, eyes, and mucous membranes.…
According to a recent article, a woman dealing with chronic fatigue and multiple UTI’s was not diagnosed with ovarian cancer until she was rushed into the hospital after collapsing. Ovarian…
The National Organization for Rare Disorders (NORD) has been a leading patient advocacy organization since the 1980s, helping advance the identification, treatment, and cure of rare disorders. In October 2021,…
In an earlier article, I've spoken about the power of Google and how it can benefit both patients and medical providers. Through the power of the internet, advocates can help…
Raghav is a two-year-old boy born with an ultra-rare disease caused by a mutated GPX4 gene. He and eight other children are the only ones in the world who have…
Living with a rare disease can be difficult for a myriad of reasons, one of them being financial. Treatments, appointments, tests, and everything else that comes with a rare disease…
Education, research, support, and patient advocacy: these are just four of the amazing things that rare disease or disorder foundations offer. Many foundations seek to offer programs and resources to…
One thing many rare patients know is that many rare diseases do not currently have any therapies. However, that is changing. There are so many possible solutions that need coordination,…
Last month, 125 rare disease patient organizations sent a letter to Medicaid directors from individual states highlighting the importance of Medicaid access for rare disease patients. "As organizations representing millions…
At the 2017 MGFA conference a panel consisting of Denise Trombly, Kim Eldridge, Mike Ursic, and Nancy Law presented “Becoming a “Take Charge” Patient: A Proactive Approach to Managing Your…
¿Por qué les importa tanto las enfermedades raras a las compañías farmacéuticas? Congreso. La FDA. Defensores de los pacientes. Y Venture Philanthropy. Cuando se trata de enfermedades raras, los medicamentos…
Why Pharma cares more and more about Rare Diseases Congress. The FDA. Patient Advocates. And Venture Philanthropy. When it comes to rare diseases, medicines haven't always been readily available. A…
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