Our mission is to amplify the rare condition voice. One of the ways we achieve that is through collaborations across the community, from patients and caregivers to industry leaders in treatment research and development. To learn more, click here.
Madrigal today released their first report of results following FDA approval of Rezdiffra for the treatment of NASH in April. Their results are on track according to company forecasts but…
Imagine that your loved one is diagnosed with a rare disease. The first thing you do is to go to the internet to understand what you can about this disease…
Acknowledgment: This patient story is sponsored by Ipsen Biopharmaceuticals, Inc. and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing…
By: Erin Santos-Primis, Mom to Isabella and Executive Director of the Isabella Santos Foundation Starting a nonprofit in honor of a loved one lost to a tragic disease is often…
Acknowledgment: This patient story is sponsored by Chiesi USA and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant, vetted,…
Acknowledgment: This story is sponsored by Neurocrine Biosciences and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant, vetted,…
Acknowledgment: This story is sponsored by Otsuka America Pharmaceutical, Inc. and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant,…
Acknowledgment: This story is sponsored by Otsuka America Pharmaceutical, Inc. and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing…
Patient Worthy is working with a partner agency who is looking to engage with patients living with Shingles. If chosen, participants will have the chance to take part in a…
Patient Worthy is working with a partner agency who is looking to engage with patients living with Hereditary Angioedema (HAE) who have reoccurring symptoms, more than 2 times a month.…
HAE is not my story. But it’s definitely part of my story. Looking back, I realize that my late childhood and early teen years held some occasional, unexplained swelling events that…
Modern medication has the ability to save lives and improve living standards. However, medicine is less beneficial when patients’ prescribed treatments are delayed, and entirely ineffective when patients forgo treatment…
Adult Growth Hormone Deficiency (AGHD) is a rare condition when your body produces less growth hormone (GH) than normal for your age and sex. AGHD may affect your body systems,…
Gabriel Low, a 17-year-old from Hawaii, just completed a 3,000-mile bike ride across the country. He’s been riding since June 11th when he embarked from Seattle, WA to raise awareness,…
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