Women's Wellness Tea May 11, 2024 Golden Valley Country Club The Women’s Wellness Tea is an educational, social (and very fun!) event that celebrates women while exploring habits that lead…
Brewery Night Hosted by the Young Leaders Board April 15, 2024 Bricksworth Beer Co, Minneapolis, MN Learn more about lung cancer by visiting A Breath of Hope’s Young Leaders Board…
We are excited to announce that Patient Worthy's award-winning podcast "Wait, How Do You Spell That? A Rare Disease Podcast" is back with a new episode. This week, Colby is…
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…
By Natalie Homan from In The Cloud Copy Theo Thomas of Secret Harbour, Australia, may be a shy, soft-spoken 8-year-old, but he loves racing his motorcycle in his town’s Lightweight…
Janet Woodcock, Director of the FDA’s Center for Drug Evaluation and Research (CDER) recently gave an interview to the publication FDA Voices about the agency’s approval in 2019 of a…
A New Working Group A team of healthcare professionals from the Institute for Quality and Efficacy in Health Care, the Drug Commission of the German Medical Association, and the Charité…
According to a story from marieclaire.co.uk, Vanessa Potter, a TV producer, suddenly woke up one morning to realize that her eyesight was rapidly failing. That morning, her mind felt fogged…
According to a story from BioSpace, Chugai Pharmaceutical Co., Ltd. has recently announced that the Marketing Authorisation Application for the its drug satralizumab has been accepted by the European Medicines…
According to a story from Biotech 365, the biotechnology company Viela Bio announced the publication of critical results from a recent study that tested the company's investigational drug inebilizumab as…
Sumaira Foundation Sumaira Ahmed established the Sumaira Foundation so that fewer rare disease patients would have to face the experience by themselves. Sumaira Ahmed is diagnosed with neuromyelitis optica spectrum disorder…
We love a good story about a community coming together! Firefighters across the Atlanta area came together to support a retired fire chief who has been partly paralyzed after being…
According to a publication at Markets Insider, the Food and Drug Administration (FDA) recently approved Soliris (eculizumab) as a treatment for neuromyelitis optica spectrum disorder. The approval marks the first…
According to a story from Global Genes, the drug developer Viela Bio recently issued a presentation of the results from a clinical trial that tested the company's investigational product candidate…
According to a story from Global Genes, the drug developer Viela Bio recently issued a presentation of the results from a clinical trial that tested the company's investigational product candidate…
According to a story from Medical Xpress, a recent study has suggested that the drug eculizumab could substantially reduce the risk of disease relapse in patients with the rare disease…
According to a story from BioSpace, the biotechnology company Viela Bio recently announced that the US Food and Drug Administration (FDA) has awarded an experimental therapy in development by the…
The 2019 NMO Patient Day This event is an opportunity for neuromyelitis optica (NMO) to converge and build community with each other. Don't miss this chance to learn more about…
Neuromyelitis optica (NMO), or Devic's disease is a rare autoimmune condition which causes inflammation in the optic nerve and/or spinal cord. The condition affects 5 in every 1,000,000 people and…
According to a story from BusinessWire, the drug developer Alexion Pharmaceuticals, Inc., recently announced positive results for its Phase 3 trial testing Soliris as a therapy for neuromyelitis optica spectrum…
According to a story from wday.com, Paisley Forsell was what you might call a bit of an adrenaline junkie. She likes to live a high energy, active lifestyle. She loves…
According to a story from Newswise, a team of scientists and researchers have recently completed research that managed to reveal the genetic nature of the unusual rare disease neuromyelitis optica.…
This event will be an opportunity for researchers, industry leaders, nonprofit organizations, and more to converge and learn about the latest research and solutions related to neuromyelitis optica.
According to an article from brightsurf.com, a commonly used allergy medication called cetirizine (commonly marketed under the name Zyrtec) was able to prevent relapse in patients with neuromyelitis optica in…
There's a whole lot more going on in your body than you know. Right now, trillions of microorganisms are hanging out in the gut (and elsewhere,) sustained in their own…
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