On October 3, 2026, families from across the country gathered in Novato, California, for Rare Family Day, a Star Wars-themed celebration hosted by Ultragenyx, a biopharmaceutical company focused on developing […]

Original title: “Rare Family Day 2026: The Power of Community ”

Compensation can feel like a verdict on your value. Executive coach Angela Justice explains why companies are usually pricing the job, not the person doing it—and how understanding the difference can help you make better career decisions.

Original title: “Opinion: Your company isn’t paying you what you’re worth”

The RARE Foundation brought together 37 advocates from six New England states for New England Rare Disease Advocacy Day on October 6–7.

Original title: “New England Rare Disease Advocates Make Their Voices Heard”

In this episode of Denatured, presented by Cytiva, Jennifer Smith-Parker speaks to Nicolas Pivet, VP & GM, Manufacturing & Digital Solutions at Cytiva. In this episode, we explore how biopharma’s real bottleneck isn’t too little data—it’s too little confidence in the decisions that drive development, manufacturing and commercialization.

Original title: “The decisions behind scientific progress”

The first-time CEO says her own sponsors took chances on her—and that industry leaders need to do the same to rebuild momentum for gender equity.

Original title: “Jazz CEO calls on industry to help rebuild momentum for leadership diversity”

Columnist G Shellye Horowitz's fashion piece, IV Couture, which was made from medical waste, is a 2026 RARE Artist finalist. That experience is part of why the RARE Artist contest means so much to me. A program of the RARE Foundation (formerly the EveryLife Foundation for Rare Diseases), it showcases the convergence of art and advocacy in the rare disease community. For me, it is an opportunity to portray feelings that words cannot always capture. “IV Couture is my way of expressing gratitude for the treatments that saved my life, while refusing to hide the reality of what survival requires. Rare disease advocacy, to me, means showing the full picture — the burden and the beauty — so the invisible parts of this life become impossible to look away from.” That meant going from 122 to 183 infusions per year — 61 more needle pokes. Each infusion takes about 20 minutes from start to finish, which added up to 1,220 more minutes, or 20 hours, spent infusing per year. Almost one full day. The burden is real. I am so excited to share that my piece, IV Couture, made the RARE Artist finals. I was diagnosed with superior mesenteric artery syndrome, another rare disease, and needed major surgery so I could eat again. This was not the first time I had to fight for a diagnosis. Years earlier, I fought to be diagnosed with hemophilia as a woman. Now I was fighting again, for a second rare diagnosis, while barely able to eat.

Original title: “IV Couture: Turning medical waste into rare disease advocacy”