As reported on PharmaBiz, the US Food and Drug Administration (FDA) has authorized Acepodia to proceed with clinical testing of ACE723, an investigational antibody-drug conjugate
As reported on Fierce BioTech, a phase 3 study conducted by MediLink has delivered positive results for Roche-partnered antibody-drug conjugate (ADC) tambotatug pelitecan (tam-peli), also
What’s the Good News? Researchers have successfully completed initial testing of an experimental Parkinson’s medication called TT-P34. The early results are very encouraging and suggest
The history of cystinosis is one of the most successful examples of rare disease research leading to meaningful treatments. In a recent interview with the
This is my son Nikolai. Nikolai was recently diagnosed with Mucopolysaccharidosis type 2, or “Hunter Syndrome.” A rare genetic form of childhood dementia, it’s caused
As reported on PharmaBiz, a combination of Imfinzi (durvalumab) and Imdelltra (tarlatamab) has delivered significant improvements in survival outcomes for patients with extensive-stage small cell
At the age of 18, I was diagnosed with a rare swallowing disorder called Achalasia. At the time of this video, I had undergone several
In honor of World Duchenne Awareness Day on September 7th, Mal Duffin has invited us to share this app designed for parents whose children are living
As reported on World Pharma News, the U.S. Food and Drug Administration has granted approval to daraxonrasib, an oral RAS-targeting therapy, for adults with metastatic
A novel investigational Ebola vaccine has shown encouraging safety and immunogenicity results in a first-in-human clinical trial, supporting further development of an alternative vaccination strategy
Editor’s Note: Patient Worthy is honored to share this article, originally written by David St. Denis, President & Director at Anteris Technologies. Transcatheter aortic valve
Although Nancy Wexler’s efforts were largely responsible for creating a genetic test to locate the Huntington’s gene, she refused to take the test herself saying
As reported on Fierce BioTech, Guardant Health has secured U.S. Food and Drug Administration approval for its Guardant360 CDx liquid biopsy test as the companion
As reported on Science Daily, researchers at the University of Michigan have identified a potential new therapeutic approach for aggressive prostate cancers that become resistant
GPRC5D-Targeting Approach Positions Company to Expand Post-BCMA Treatment Options As reported on Fierce BioTech, Bristol Myers Squibb announced positive results from its pivotal Quintessential trial
Editor’s Note: We’re honored to share the following article from our friends at the Courageous Parents Network. To see this article in its original format,
Editor’s Note: Patient Worthy is honored to share this article from Rareatives, originally written by our friend Jessica Lynn. To see the article in its
Editor’s Note: Patient Worthy is honored to share this story from our friends at Elephants & Tea, originally written by Bill Phillips, a colorectal cancer
Your experience could help make an impact.
We’re looking to connect with people living with NSCLC with a KRAS G12C mutation who are interested in sharing their experiences and helping bring greater awareness to the patient journey.
By lending your voice, you can help others feel seen, heard, and less alone — while contributing to a better understanding of what it’s really like to live with this diagnosis.
Interested in getting involved? Learn more here: ow.ly/BxGB50ZO24i or through the link in our bio.
#NSCLC #KRASG12C #LungCancer #PatientVoice #PatientAdvocacy #ShareYourStory #PatientWorthy
A form of #musculardystropphy OPMD Association Non-Profit for Oculopharyngeal Muscular DystrophyDid you know there is a Global OPMD Patient Registry? The OPMD Association has taken an important step by partnering with CoRDS (Coordination of Rare Diseases at Sanford) Research. This collaboration aims to enhance the understanding and awareness of Oculopharyngeal Muscular Dystrophy (OPMD) through the establishment of a comprehensive registry. Global OPMD Patient Registry- opmd.org/registry/
Help spread the word and increase awareness by sharing this initiative with others. 💙💛
#OPMDassociation #OPMD #OculopharyngealMuscularDystrophy #OPMDPatientRegistry
United Leukodystrophy Foundation #KrabbeDiseaseWe're excited to feature Hunter's Hope Foundation as today's social media takeover partner. Follow along all day and learn more about their organization!
Hunter’s Hope Foundation was founded in 1997 by Jim and Jill Kelly after their infant son, Hunter, was diagnosed with Krabbe disease.
Hunter’s Hope works to provide family support, advocate for expanded newborn screening, connect families with expert care through the Leukodystrophy Care Network, and improve medical care and quality of life for individuals affected by leukodystrophies.
Learn more at www.huntershope.org.
#LeukoAware #HuntersHope #LeukodystrophyAwareness
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