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|We believe rare disease patients are people, not a diagnosis. Through education, awareness and some humor we aim to help people live with their chronic conditions and not just through them by providing relevant news and stories and sharing information. We are dedicated to finding and curating news and personal stories about Hereditary Angioedema (HAE), Cryopyrin-Associated Autoinflammatory Syndromes (CAPS), Common Variable Immunodeficiency (CVID), Ankylosing Spondylitis (AS), Primary Immunodeficiency (PI), Cystinosis, Dystonia, Familial Hypercholesterol (FH), and Glucose Transporter Type 1 Deficiency Syndrome (GLUT1 DS).
We are in the business of advocating for patients, especially those with rare conditions and chronic illnesses. Sharing stories, cultivating experiences, providing the latest medical findings —connecting people and pioneering production of “Patient Worthy” information is in our DNA. Is it in yours?
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