Inizio Engage’s Post

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

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

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

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

Live from #PCRLV: "The roadmap will be a very useful tool to bridge the gap between the patient and the clinician," - Wil Woan, Heart Valve Voice. Read our new roadmap to the successful implementation of shared decision-making in #heartvalve disease now - https://bit.ly/3ucBcwB

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

Help make 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 June 21-23, 2024! #hspandpls #spasticparaplegiafoundation #awarenesshspandpls #releasecures #curehspandpls #disabilityawareness #patientadvocate #patienteducation #findacure

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

Do you know about the connection between Sjögren's disease and dry eye? Damon Dierker, OD, FAAO, and Jacob Lang O.D., F.A.A.O. dive into how you can learn to spot SD in your patients and how to implement the most effective strategies at your practice. Read more: https://hubs.ly/Q02BC2fH0 #optometry #eyecare #dryeyedisease #dryeye

We are proud to support the new roadmap that provides patient organisations, patient advocates and healthcare professionals with the knowledge and guidance needed to make shared decision-making a reality for people living with heart valve disease. Read the new shared decision-making roadmap here: https://bit.ly/47sfdAr #HeartSDM #SharedDecisionMaking