Editor's Note: Patient Worthy is honored to share this interview, featuring Kate, an ovarian cancer survivor, and Dr. Premal Thaker, M.D. “There is fear, and there are hard days, but…
For over three decades, Neurocrine Biosciences, Inc. has been working to support individuals with neurological, neuroendocrine and neuropsychiatric disorders through the development of breakthrough treatment options. One of the company’s…
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…
On February 28th, 2024, the first-ever White House Rare Disease Forum took place. Hosted by the White House Office of Science and Technology Policy, this forum provided a platform for…
Rare Community Profiles Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families,…
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…
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…
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…
When Richard Poulin's daughter Rylae-Ann was born, it wasn't long before he and his wife began to wonder if something was wrong. They both felt confident in understanding the…
For many people with a rare condition, sharing their story can be personally fulfilling—and it can help others realize that they are not alone. More so, shared stories can encourage…
Right now, there are approximately 100 people in the world who have been diagnosed with Ogden syndrome, a rare neurodevelopmental disorder. Lacey Smith’s 11-year-old daughter Savannah is part of this…
When Arica Svoboda thinks of her two children, Hayes and Hendrix, she can’t help but fill up with love. She tells Patient Worthy: “My boys are special. Their smiles and…
For many people, a rare disease diagnosis can feel like life is over. For Angel, growing up with homozygous familial hypercholesterolemia (HoFH), a rare genetic condition characterized by extremely high…
What would you do if you were told that your child had a rare disease? How about if your child had an ultra-rare disease, which affects fewer than 20 in…
Before you read on, make sure to check out Part 1 of Emily's story. In Part 1, Emily discusses what Stickler syndrome is and her diagnostic journey. Today, we'll discuss coming to…
Living with a rare genetic disease like Stickler syndrome (Or “Sticklers”) isn’t a death sentence. If Emily Katharine wants people to know one thing, that’s it: that they are more…
From November 10-14, 2022, various stakeholders within the rheumatology sphere connected at the American College of Rheumatology’s (ACR) Convergence 2022. During ACR Convergence, described as the world’s premier rheumatology experience,…
Before you read on, make sure to check out Part 1 of Jennifer's story. In Part 1, we discuss what multiple sclerosis is, its symptoms, treatment options, and Jennifer's journey from diagnosis…
If there is one lesson that Jennifer embodies in full, it’s this: always live life to your fullest. That’s what Jennifer aims to do every day. As an education consultant,…
The American Hematology Society (ASH) held its 64th Annual Meeting in December 2022. During the Meeting, a variety of stakeholders—including physicians, researchers, and industry members—gathered to discuss research, trends, and…
The American Society of Hematology (ASH) held its 64th Annual Meeting from December 10-13, 2022. During the meeting, doctors, researchers, and other stakeholders within the hematology sphere came together to…
Before you read on, don't forget to check out Part 1 of our interview. In Part 1, Dr. Raghavan discussed his background, explained what lupus is, and introduced some of the findings…
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