Ultomiris Reduces Proteinuria in Phase III Trial for IgA Nephropathy
- April 27, 2026
Regular Yoga Practice Improves Cardiometabolic Health
AskBio Scales Up Gene Therapy Manufacturing for Landmark Parkinson’s Disease Trial
Awareness Isn’t the Hard Part — What 18 Years in the Moebius Syndrome Community Has Taught Me
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Many rare diseases affect the nervous system and muscles, leading to symptoms like increased muscle tension or stiffness that can impact movement, comfort, and daily activities. For people in the rare disease community, symptoms like this are part of the complex ways these conditions affect the body. Raising awareness helps improve understanding of neurological symptoms and why recognizing them can be important for diagnosis and care.
#rarewordoftheweek #raredisease #rarediseaseawareness #PatientWorthy
#geneticcounseling #GeneticTesting @TessResearchFoundationIt's #NationalDNADay! 🎉
Receiving an SLC13A5 Epilepsy diagnosis involves genetic testing, which looks at a person's DNA to find any changes that may affect health. 🧬
Our Founder & Executive Director, Kim Nye, recently joined genetic counselor, Dr. Lauren Beretich to walk through what’s in a genetic report and how this important information can help guide a family’s next steps. ✍️
📹 Watch the video here: bit.ly/4tcWnrj
#TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness
A Cure In Sight Ocular MelanomaNew episode! Outliving the Statistics: A Story About Survivor’s Gratitude | The Eye Believe Podcast
📺 youtu.be/Zc6TF_sRnJ8
🎧 www.podbean.com/eas/pb-agqiv-1aa49f7
What does it mean to outlive the statistics? 💙
In this episode of Living in the Long Middle, we hear from Katie Doble, a metastatic ocular melanoma survivor who is now NED following TIL therapy.
Katie shares an honest and powerful perspective on survivor’s gratitude and survivor’s grief—the complex emotions of doing well while others in the community are not. Her story is a reminder that hope and heartbreak can exist at the same time.
💬 This is a deeply personal topic—if it resonates with you, we invite you to share your thoughts in the comments.
Article from Huffpost: www.huffpost.com/entry/doctor-cancer-clinical-trials-advocacy_n_646515dbe4b0bfd6447f88df
Katie's Blog: futurehappyself.com/
UPMC Blog post: hillman.upmc.com/cancer-care/melanoma-skin/patient-stories/katie-doble
Katie's Instagram: www.instagram.com/ceortman/
