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…
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…
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…
Neuromyelitis optica spectrum disorder (NMOSD) can have long-term impacts for those affected. Current research suggests that up to 69% of patients may have severe unilateral or bilateral vision loss…
Master Chef Christine Ha of Dublin is coping with the fact that an accurate diagnosis years earlier would have prevented her blindness. Christine now spends a great deal of time…
A recent study published in Science Translational Medicine has investigated a possible factor of the development of fetuses born to mothers with neuromyelitis optica spectrum disorder (NMOSD). Specifically, it looked…
The American Academy of Neurology (AAN) 2022 Annual Meeting is held from April 2nd until the 7th in Seattle, with its virtual counterpart happening on April 24th to the 26th.…
How effective is UPLIZNA on treating attacks associated with neuromyelitis optica spectrum disorder (NMOSD)? According to a news release from biopharmaceutical company Horizon Therapeutics plc ("Horizon"), an analysis highlighted that…
A recent study has demonstrated that neuromyelitis optica spectrum disorder (NMSOD) patients treated with eculizumab have a lower risk of adjudicated relapse compared to those treated with placebo. This study…
Magnetic resonance imaging (MRI) has been used to study neuromyelitis optica spectrum disorders (NMOSD) in the past. Specifically, it is used to visualize the involvement of the spinal cord's central…
Back in June of this year, the FDA granted approval to UPLINZA to reduce attacks in patients with anti-aquaporin-4 immunoglobulin G seropositive (AQP4-IgG+) neuromyelitis optica spectrum disorder (NMOSD). Now, the…
According to a recent press release from Horizon Therapeutics, UPLINZA, the only FDA-approved treatment for AQP4 antibody-positive neuromyelitis optica spectrum disorder (NMOSD), may be a viable treatment option for African…
A new study published in the journal Scientific Reports has helped explain the differences between neuromyelitis optics spectrum disorder (NMOSD) after optic neuritis (ON) and multiple sclerosis (MS). Although previous studies have…
The European Commission recently approved of Enspryng for neuromyelitis optica spectrum disorder (NMOSD). Now, European patients have a new treatment option. This one is especially useful as it can be…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
A 2019 Survey Found 70% of Patients with NMOSD Relapsed Every Year. According to a recent article in China Daily, the patients interviewed for this article said that their…
In life, we are faced with a variety of obstacles. But it is the choices we make in facing these obstacles which define ourselves and our legacies. For Avery Allmond,…
It takes courage to suspect that there is something wrong and doctors are misdiagnosing your symptoms. It takes courage to keep going back and politely but firmly asks for more…
Many rare disease patients face difficulty when it comes to diagnosis. In fact, it takes an average of five to seven years for them to finally receive the correct diagnosis.…
On March 11, 2021, Patient Worthy attended an educational seminar hosted by the Cleveland Clinic titled Neuromyelitis Optica Spectrum Disorder (NMOSD): Educational Seminar for Patients, Family Members and Caregivers Focus…
On March 11, 2021, Patient Worthy attended an educational seminar hosted by the Cleveland Clinic titled Neuromyelitis Optica Spectrum Disorder (NMOSD): Educational Seminar for Patients, Family Members and Caregivers Focus…
Many patients with rare conditions know that sometimes it can be extremely difficult to find targeted treatment options. In fact, a large number of rare conditions still have no approved…
According to a story from BioSpace, Genentech (of the Roche Group) has announced its plans to present new data related to its drug satralizumab-mwge (marketed as Enspryng™) at the upcoming…
Health Canada has recently granted market authorization to Hoffman La-Roche Limited for their neuromyelitis optica spectrum disorder treatment, ENSPRYNG. Canada is the first country to offer this medication, and hopefully…
In a story from Multiple Sclerosis News Today, multiple sclerosis is known for its variability- one patient's experience may look nothing like a friend's with the same disease. For this…
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