Join us at #EHA2024! In an oral presentation, we’re sharing data from our PATHFINDER clinical study with a median follow-up of more than three years, and we’re presenting results from our PRISM Survey that highlight patient and healthcare provider perspectives on the burden of systemic mastocytosis. These data reflect our ongoing partnership with the SM community to advance treatment and address patient needs across the spectrum of the disease.
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🔍 Join Premier Research for an enlightening webinar on integrating patient perspectives into #raredisease studies! Discover effective strategies to boost engagement, accelerate enrollment, and optimize study success. In this webinar, gain insights into key concepts of rare disease research and the unique challenges it poses. The expert speaker, Kris O'Brien will discuss building early relationships with patients, incorporating their feedback into study design, and enhancing the overall participant experience. 🔗 REGISTER HERE: https://buff.ly/3KprSds #ClinicalResearch #PatientRecruitment #PatientEngagement #TherapeuticAreas #RareDiseaseTrials #RareDiseaseClinicalTrials #RareDiseases #OrphanDrugs
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Success in launching treatments hinges on understanding complex disease landscapes. Imagine not having clarity on: 👩⚕️ Who are the most affected patients and their needs? ⏳ Average treatment waiting times post-diagnosis? 🚫 Diagnosis process hurdles? 👨⚕️ Key healthcare professionals involved? Disease Landscape Analysis fills this information gap by providing a comprehensive picture of the disease, the patients, and the treatment environment. Moreover, it shapes targeted marketing strategies to enhance patient care and outcomes. #RWE #DiseaseLandscape #PatientCare
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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
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#Specialtymedication prescriber friends, check out the live webinar tomorrow from Accredo by Evernorth + Muscular Dystrophy Association. Learn more about a unique patient-centric approach in the treatment of rare conditions.
Join us Friday, May 31 at 12pm ET, for a live webinar in collaboration with Muscular Dystrophy Association, "A Patient-Centric Approach to Rare Conditions". Our speakers will discuss the importance of patient-centric approaches in treating rare conditions. They'll also detail the unique services offered by Accredo that help health care providers enhance rare disease patient care and outcomes. 👉 👉 Don't miss this opportunity to gain valuable insights from the industry's top specialists. Sign up now. https://bit.ly/4brJUYJ Elsa Tchakouté, PharmD Jarred Daugherty Noel Van Buren #SpecialtyPharmacy #RareDisease #PatientCare #Webinar
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Working to Fund A Cure #HSPandPLS Exe Dir, SP-Foundation.org / Pilot, MRPC GRR BOD
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
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Success in launching treatments hinges on understanding complex disease landscapes. Imagine not having clarity on: 👩⚕️ Who are the most affected patients and their needs? ⏳ Average treatment waiting times post-diagnosis? 🚫 Diagnosis process hurdles? 👨⚕️ Key healthcare professionals involved? Disease Landscape Analysis fills this information gap by providing a comprehensive picture of the disease, the patients, and the treatment environment. Moreover, it shapes targeted marketing strategies to enhance patient care and outcomes. #RWE #DiseaseLandscape #PatientCare
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🔬 Insightful discussion on #raredisease clinical trial design! Scott Schliebner emphasizes the significance of collaboration among care teams and stakeholders, especially in rare disease trials. From engaging family members to expanding outreach beyond sites, every participant is pivotal. Dr. Chad Briscoe mentions how much closer the teams are to the patients. Don't miss out on this enlightening conversation! #ClinicalTrials #RareDisease #HealthcareCollaboration
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🚨 Delayed Diagnosis: A Hidden Crisis Research shows that up to 20% of cancer cases are diagnosed later than optimal, which can significantly affect treatment success and survival rates. Early intervention is crucial. Join ECRI, the World Health Organization (WHO), and providers across the globe on September 17 as we focus on improving diagnosis for patient safety. In celebration, we’re sharing free resources to help you enhance care and reduce missed and delayed diagnoses: https://hubs.la/Q02PyTxy0 #WorldPatientSafetyDay #SafeCareForAll
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Attending WORLDSymposium™ 2024 this week? Join us for a satellite symposium where global experts will share perspectives about how the management of Fabry disease is evolving and how multidisciplinary teams can work together to create optimal treatment pathways for patients. Learn more: https://lnkd.in/euMymrEG #WORLDSymposia #Fabry #RareDiseases #ChiesiGlobalRareDiseases
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The criteria for disease severity can significantly influence a psoriasis patient's treatment options. Despite the significant impact on their quality of life, the current clinical definition of psoriasis severity is limited and doesn't fully capture patients' diverse challenges. Visit the #IPCWebsite to learn more about our project on recategorizing #psoriasisseverity—access free publications, research, and resources on this ongoing initiative. https://lnkd.in/embTC7U3 #IPCCommunity #PsoriasisResources #PsoriasisDiseaseSeverity
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