Our VP of Patient Advocacy, Cynthia Cassandro attended World Orphan Drug Congress USA’s #WorldOrphanUSA conference. Cynthia joined leaders on the panel: Challenges of Diagnosing & Treating Rare Diseases in Adult Patients. This was a great opportunity to share our experience in the #ALSP community.
Wishing everyone participating in the World Orphan Drug Conference a great few days in Boston. We look forward to connecting with friends, colleagues and and making new acquaintances.
#worldorphanUSA #biotech #lifescience #raredisease
Sneak peek 👇 watch the full 📽️ here: jax.org/news-and-insig…
JAX's Paige Martin & Matt Simon attended #WorldOrphanUSA to represent the #RDTC and their work to accelerate the path from diagnosis⏩therapeutics for #raredisease patients to live longer, healthier lives.
#JaxRARE
📣 World Orphan Drug Congress USA is tomorrow! We'll be there to discuss the #PatientExperience and how #ScoutClinical is making it easier for #Patients to stick with #ClinicalTrials . Let's talk! Booth 417.
hubs.ly/Q01P2jvF0
#JoinTheConversation #RareDisease #WODC2023 #WorldOrphanUSA
At #WorldOrphanUSA , our CEO, Dr. Emil Kakkis, will take the stage to deliver a keynote presentation on using biomarkers for #RareDiseases . Nicole Miller, VP of Molecular Diagnostics, will also take part in a panel on #NewbornScreening and the future for rare disease. More below.
I was so honored to be a roundtable speaker, 'Mental Health and Rare Disease - Discussion on coping strategies for managing mental health while dealing with a rare disease.' World Orphan Drug Congress USA
at #WorldOrphanUSA
We are in Boston at @orphanconf World Orphan Drug Conference for today’s presentations from Greg Palko, VP, NA Oncology Franchise Head, and Richard Wilson, SVP, NA Rare Disease Franchise Head. Excited to engage with #raredisease and industry experts! #WorldOrphanUSA
Great talk on the difference between data ownership and data control, and the benefits and challenges of sharing data with external organizations. Including the considerations for compliance with international requirements for data protection (GDPR,HIPAA)
#WorldOrphanUSA
We had an incredible time at the World Orphan Drug Congress USA 2024! Our team was honored to contribute to the discussions around accelerating rare disease treatments.
We're grateful to have played a part in the conversation around #orphandrugs and #raredisease treatments.
#WODC24 #WorldOrphanUSA
It’s Day 2 of #WorldOrphanUSA and we are already feeling inspired. Come see us at Booth #213 to talk about breaking down silos and fostering collaboration for #raredisease patients. The more we can spread the word about n-Lorem, the more patients can be helped.
Hana and Patricia Weltin from Beyond the Diagnosis unveil their latest masterpiece featuring a portrait of Yiannis at #WorldOrphanUSA
Until next time! 👋 The last few days at #WorldOrphanUSA have been incredibly insightful. We spoke at keynotes and panel sessions, met with key #RareDisease stakeholders and brainstormed ways to advance orphan drug development and improve access to life-saving therapies.
Shout out to the 250+ participants who made the #WorldOrphanUSA Congress a memorable event. Our CEO, Dr. Emil Kakkis, inspired us all to unite as one rare nation and advocate for the FDA's accelerated approval of rare disease #biomarkers . World Orphan Drug Congress USA
#AgendaAseBio 📅 | Boston acoge desde este martes hasta el próximo jueves 25 de abril el #WorldOrphanUSA (World Orphan Drug Congress USA), uno de los eventos mundiales de referencia sobre #MedicamentosHuérfanos y #EnfermedadesRaras
Rocket President & COO, Kinnari Patel and Chief Gene Therapy Officer, Jonathan Schwartz will be speaking at the #WorldOrphanUSA this week. We’re looking forward to bringing our perspective to this conference with the goal of fostering collaboration to help #RareDisease patients.
We are pleased to share that Tsveta Milanova, CCO and Sarah Gheuens, CMO and Head of R&D, are featured panelists at this year's World Orphan Drug Congress USA event. For more information, read here: secure.terrapinn.com/V5/step1.aspx?…. #WorldOrphanUSA
Today's #WorldOrphanUSA Panel Discussion:
'We need to make sure we have the evidence collected early within the clinical trial ecosystem that then is available to payers to support access at the time of approval' - Annie Kennedy
The EveryLife's Jamie Sullivan and Julie Breneiser from Gorlin Syndrome Alliance discuss 'Patient-first innovation: FDA shifting rare diseases endpoints' #WorldOrphanUSA
