Before you read on, please make sure to check out Part 1 of our interview, where we discuss what a desmoid tumor is, and share Amy's story of living with a desmoid…
It is incredibly important to raise awareness of rare and underserved conditions; this increased awareness not only helps to spread the stories of those affected, but to garner support, connect…
Written by Dennis Lodge Inclusion in the workplace is a big thing for virtually every major corporation in the world, however, the World Economic Forum statistics say that merely 4…
September is a wonderful month to raise awareness. So mark down September 24th on your calendars for the 8th international Atypical Hemolytic-Uremic Syndrome (aHUS) Awareness Day! aHUS Awareness Day is…
In the United States, Orphan Drug designation is granted to drugs or biologics intended to treat, prevent, or diagnose rare conditions. A "rare" condition is defined as one affecting fewer…
WA State Rare Chronic Illness Support Group A supportive group for WA state residents living with rare health challenges facilitated by Carrie Pope, MSW, LICSW 2nd Friday of each month,…
For five years, 20-year-old Christopher Backlund lived with his grandfather, with whom he had a strong and meaningful bond. Unfortunately, Christopher's grandfather, Mitchell, passed away in Februay 2021. As Christopher…
Victoria Acosta has always been an active child. The bubbly two-year-old, who currently lives in Tennessee, is described by her mother Andrea Rocha as constantly moving. However, it can be…
Web-Based Rare Chronic Illness Support Group A peer support group for those living with rare health challenges led by Kerry Heckman, MSW, LICSW 1st Tuesday of each month, 4-5pm PST…
Every day, Jackson Garwood’s parents, Darren and Rebecca, look at him and smile. There were points when they didn’t expect to have their son for this long. You see, Jackson…
Unfortunately, the drug development process can be difficult, especially in the rare disease sphere. Many drug developers choose to focus on larger disease states, as these are typically more…
Before you read, make sure you check out Parts 1 and 2 of our interview. In Part 1, we discussed what Wegener's granulomatosis (GPA) is, Anna's diagnostic journey, and her first episode of symptoms.…
Don't forget to read Part 1 of our interview, where we discuss what Stevens-Johnson syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) are, and learn more about how Viktoria ended up hospitalized. Today,…
StatNews recently carried an article describing a paper prepared by New York’s Tisch Research Center and published this week in the Brain Communications journal. The paper contains promising breakthroughs on…
Ally and Jake Shaw always dreamed of having a big, happy family. The pair began their journey with their daughter Nala, now just under 3 years old, and later brought…
Postnatal Zika virus can cause other complications and health issues for those affected. According to Neurology Advisor, one such complication is Guillain-Barré syndrome (GBS). Researchers believe that GBS following postnatal…
Before you read any further, make sure you've read Part 1 of our interview, where Anna and I discussed what Wegener's granulomatosis (GPA) is, her diagnostic journey, and how she managed her…
Viktoria Cupay is no stranger to raising awareness about underserved and invisible illnesses. In 2016, two years after she began searching for a diagnosis, Viktoria found out that she was…
It’s no secret that being a part of the chronic illness and/or rare disease community can sometimes be lonely and isolating. Many people, while empathetic to the challenges faced within…
According to a story from Kalimpong News, over 300 children with rare diseases in India are still waiting for the release of pledged funds from the Union Health Ministry so…
Both the 3rd Annual Gene Therapy for Neurological Disorders meeting and the ADVANCE 2022 Sanfilippo Community Conference were held in July 2022. During both meetings, researchers presented new data from…
Compassion [kuhm-pash-uhn] noun A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering. Compassion Corner is…
In the United States, Orphan Drug designation is a special status granted to drugs or biologics intending to treat, prevent, or diagnose a rare disease or condition. A "rare" condition…
For as long as she can remember, 30-year-old Ankona “Mo” Das has loved traveling. Traveling has provided a way to break out of her shell, to experience new landscapes, and…
Patient Worthy would like to wish a Happy 2nd Birthday to one of our partners, the TAPS Support Foundation. It is hard to believe that it has only been two…
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