According to an article from prnewswire.com, the Leukemia and Lymphoma Society (LLS) obtained new funding for cancer research thanks to a donation from The Sarah Cannon Fund, which is part…
A famous quote attributed to the Father of Western Medicine, Hippocrates, illuminates the importance of diet in disease treatment. For those who suffer from multiple sclerosis (MS), modern science might…
Ellie Simmonds is a dominate Paralympic swimmer having won five times in her 23-years and was honored locally for her success, reported Border Telegraph. Just recently, she attended to a…
Midatech Pharma just received verbal confirmation from Polish regulators to conduct the first European in-human study for a treatment that could potential aid those with carcinoid cancer and acromegaly, reported…
According to a story from CBC News, Jillian Lanthier's son Landen Alexa was diagnosed with a severe and rare form of juvenile idiopathic arthritis at six years old. Although he…
Carl Luepker was diagnosed with dystonia when he was 12-years-old, reported KALW. The twitching started when he was 10-years-old. This quickly started affecting his piano playing, something he loved so…
According to a story from ANCA Vasculitis News, The European Medicines Agency just approved the pharmaceutical company ChemoCentryx's application for the marketing of avacopan as a potential treatment for anti-neutrophil…
Shaquem Griffin, an inspiration on and off the field, recently received the Rare Disease Champion Award presented to an outstanding leader in college football and the rare disease community alike,…
Another successful partnership in the rare disease community has come to fruition, reports The Pharma Letter. Just this past week, CureVac and Arcturus Therapeutics will become a powerhouse together with…
There are many reasons to celebrate the life of genius physicist Stephen Hawking, but celebrating his 76th birthday is definitely extra special, reports Rare DR. As many know, Hawking suffers…
Happy Friday, Patient Worthians! This week we have articles about people working together on different types of rare disease teams. We have stories from a family who supports two children…
Patient Worthy is proud to announce we are participating in Patients as Partners EU in London, UK on January 23rd. Patients as Partners EU represents the only conference opportunity in Europe…
Patients suffering from sickle cell disease, SCD, might just be getting news they've been waiting to hear for a long time. Just this week, the U.S. Food and Drug Administration…
According to a story from philly.com, many people with severe forms of brain cancer are not receiving sufficient hospice treatment, according to a recent assessment. The study took data from…
5-month-old baby, Rohaan's, life was spared when he recently underwent surgery to treat his rare congenital heart condition, surgery that almost didn't happen, reported Times Of India. His parents, Muhammad…
According to a story from prnewswire.com, the experimental treatment SPR001 was just granted orphan drug status by the Food and Drug Administration (FDA). The new treatment is currently being developed…
Cycle Pharmaceuticals shook hands with US-based firm, Aprecia Pharmaceuticals as they agreed to develop and commercialize treatments for rare diseases using the advanced technology of 3D printing, recently reported Cambridge…
Organovo Holdings recently stated that its 3D bioprinted therapeutic liver tissue was granted orphan drug status by the Food and Drug Administration (FDA). Taylor Crouch, the company CEO, was excited…
Poor mental focus may be a contributing to the paralysis that commonly occurs after a stroke, according to a new study. A person who has had a stroke, when the…
WASHINGTON, D.C. & SAN DIEGO — Children’s National Health System and Retrophin, Inc. (NASDAQ: RTRX) are pleased to announce the creation of the Retrophin Rare Disease Network at Children’s National.…
The pharmaceutical company Protalix Biotherapeutics, Inc. announced that a drug currently in development called PRX-102 has been granted orphan drug status by the European Commission. The treatment is being developed…
The FDA passed along their nod of approval for the sought after gene therapy treatment, Luxturna, reported Engadget. This will be used to help aid those made blind by a…
Welcome back, Patient Worthians! We're starting out the new year with stories of strength and awareness. This week, we have an article about a man with CSF leak, whose life…
Music is sometimes more powerful than we even realize on the daily. Music keeps little 6-year-old Ollie Carroll going, even though he understands his life will be short. Ollie and…
In 2009 Emily Rochac Argueta realized her vision was rapidly deteriorating headed towards blindness, reported Times Union. The aspiring physician assistant was diagnosed with keratoconus, a rare eye disease that…
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