Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
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,…
Jenna Cohen was 20 weeks pregnant when a scan revealed a significant developmental abnormality in her future child: the absence of the fibula. The fibula, or calf bone, is found…
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,…
When Tucker Krause was a young boy, his family noticed that he frequently got sick. More than frequently, even. In fact, when his mom really thinks about it, Tucker was…
Receiving a rare disease diagnosis can be challenging. It can be even more challenging when there isn’t a lot of information to lean back on. While there has been…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
When Valentina Rodriguez and Jason Gutierrez learned that their child would be born with spina bifida, they jumped into action. Neither knew exactly how to help their daughter, not yet—but…
Newborn screening is an important public health initiative that checks for rare and serious genetic, blood, hormonal, or metabolic conditions at birth. The test collects blood through a heel…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
7-year-old Isla Edwards suddenly found herself struggling to see. Her vision became fuzzy when trying to focus on objects at a distance. Her parents assumed this meant Isla needed…
When young Emmett Cordes initially complained of knee pain, his mother attributed it to his active nature. However, as the pain persisted, a visit to the doctor and subsequent…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
Sara Kear and Jake Kaufman always knew that they wanted to start a family. So they did, welcoming into the world their beautiful children: Lola, now age 3, and Mills,…
In 2001, Ebtesam Al Shehhi was 23 years old and looking forward to welcoming her first child into the world. When random symptoms began appearing, she first wondered if…
Indie songwriter and singer Sufjan Stevens recently posted on, Tumblr, his favorite media platform, that he has been diagnosed with Guillain-Barré syndrome (GBS). Sufjan is now in the hospital…
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…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
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…
A rare disease diagnosis can often take many people by surprise. The diagnostic process can be long and tough; managing symptoms is often no less easy. Ellen Inouye discovered this…
For the first two months of her pregnancy, Kristine Koser felt pretty good. Koser and her husband, Andrew, couldn't wait to welcome their daughter Aubrey into the world. Everything seemed…
When Tom and Tammy Parteleno first learned that their son Michael had Batten disease, it felt overwhelming. Scary, even. What would the future bring for their son? The Parteleno family…
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