Tenaya Therapeutics’ Post

Delighted to share insights from Lifebit's latest blog showcasing the vital role of patient registries in advancing rare disease research. Uncover the four key benefits propelling progress in healthcare solutions: https://bit.ly/49hJKlo #RareDisease #PatientRegistries #PrecisionMedicine #Lifebit

June 21-23, 2024! #TampaFL JOIN SP-Foundation make some NOISE for #spasticparaplegia. A rare disease group needs every member to help grow awareness. The 2024 SPF #HSPandPLS Annual Conference brings together patients, physicians, and researchers to really see YOU! Come share your story with others register online for in-person 21-23, 2024 or virtually! #hspandpls #spasticparaplegiafoundation #awarenesshspandpls #releasecures #curehspandpls #disabilityawareness #patientadvocate #patienteducation #findacure #championcures #releasecures

Inflammation is a silent killer. Our Co-Founder and Chief Clinical Officer, Jackie Iversen RPh MS, believes that today’s healthcare system treats inflammation too late, leading to disease progression and ultimately death. The advances that need to happen in the healthcare arena regarding inflammation are significant and we are marching forward with some powerful developments. We'd like to discuss this in greater detail during our webinar this Thursday at 1 pm EST. Won't you please join us? You can register for this event here: https://bit.ly/3WIUVjO #senjampharma #goodkarmapharma #webinar

June 21-23, 2024! #TampaFL JOIN SP-Foundation make some NOISE for #spasticparaplegia. A rare disease group needs every member to help grow awareness. The 2024 SPF #HSPandPLS Annual Conference brings together patients, physicians, and researchers to really see YOU! Come share your story with others register online for in-person 21-23, 2024 or virtually! #hspandpls #spasticparaplegiafoundation #awarenesshspandpls #releasecures #curehspandpls #disabilityawareness #patientadvocate #patienteducation #findacure #championcures #releasecures

Can't wait to share our survey results and chat on Rare Disease Day - hope you can join! There are more than 7,000 known #RareDiseases, with more being identified each day. The healthcare providers and life science organizations who deliver care for rare disease patients and develop their treatments need more support than ever. Join us on 2/29—the rarest calendar day of the year—at 12 p.m. ET to see the results of our fourth annual survey in honor of #RareDiseaseDay. In this webinar, we'll discuss the greatest challenges patients and providers face around the treatment of rare diseases and how life science organizations can make a difference in educating providers and identifying patients that need treatment.  Register today: https://lnkd.in/gj2ydN9J #LifeSciences #RareDisease #ProviderOrganizations #RareDiseaseTreatments #RareDiseaseDay

It’s the FDA's virtual public meeting today, in global observance of Rare Disease Week. This event brings together patients, healthcare professionals, and industry leaders to discuss vital topics impacting rare disease research and treatment. We're looking forward to attending and gaining valuable insights to further our mission of improving patient outcomes. #RareDiseaseWeek #FDAEvent #RareDiseaseResearch #RareDiseaseAwareness

Actions and steps taken now at both global and local levels will pave the way towards global implementation of shared decision-making in #heartvalve disease. In consultation with 19 multidisciplinary experts, we identified five key areas for global action and six local calls to action. Learn more about local call to action 1: Develop comprehensive and accessible local-level patient information materials on shared decision-making in HVD - https://lnkd.in/d9iSYrrw #HeartSDM

In Crohn’s disease (CD), evolving management goals emphasize a treat-to-target approach. The STRIDE II consensus, developed by healthcare providers (HCPs), aims for endoscopic healing and clinical remission. However, survey data reveal that HCPs and patients may differ in perspectives on symptoms like bowel urgency and fatigue. Addressing these patient experiences is essential for comprehensive CD management. HCPs can learn more here: https://e.lilly/3W94Oa0

Consistency is often the battle in healthcare: great care pathways can guide everyday services to excellence, but can also give a clear expectation to patients on what they can expect and when. And hence Call to Action #4 in the recent Global Heart Hub roadmap for #shareddecisionmaking! ✅

Learn more about our fourth local call to action from our shared decision-making in heart valve disease roadmap ➡ Seek to include a distinct step(s) within local HVD patient care pathways where the individual’s preferences, values and priorities can be understood and captured. Actions and steps taken now at both global and local levels will pave the way towards global implementation of shared decision-making in #heartvalve disease. Read more: https://lnkd.in/d9iSYrrw #HeartSDM