The biopharmaceutical industry descended on our hometown in San Diego this week to participate in the BIO International Convention #BIO2024. Once again, Travere sponsored a breakfast for patient advocates attending the convention, where our president and CEO Eric Dube addressed a full room. Sika Dunyoh, senior director of patient advocacy, moderated a panel on patient-focused drug development featuring Danaé Bartke, co-founder of HCU Network America. #StandUpForScience #InRareForLife #TravereTherapeutics #PatientAdvocacy
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In our latest video, we explore the partnership between pharmaceutical companies and patient advocacy groups. Discover how this collaboration amplifies patient voices and accelerates medical research. Click the link to check out our video! #PatientAdvocacy https://bit.ly/41RwEZf
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We are thrilled to announce the continued collaboration between Astellas and Patient Advocacy Leaders and Drug Development Industry Network (PALADIN), as well as the launch of the highly anticipated PALADIN Playbook and Resource Repository. This collaboration represents an important milestone in our efforts to advance patient advocacy group (PAG) and industry collaborations, with the ultimate goal of increasing access to life-saving treatments. PALADIN Consortium, in which Astellas is an active participant, plays a pivotal role in establishing more effective relationships between PAGs and biopharmaceutical companies. By developing consensus-based guidelines, training, resources, and competencies, PALADIN aims to optimize collaborations and transform the pace of new medical therapies' development. We are excited about the potential of this collaboration and the impact it will have on relevant stakeholders and the community. Together, we can create meaningful change and drive progress in the industry. Stay tuned for further updates and announcements as we continue this exciting journey with PALADIN. For more information, including PALADIN Playbook and Resource Repository, visit https://lnkd.in/gPk4H8M7. #PatientAdvocacy
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The PALADIN Skills and Training Workstream has developed training materials to help Patient Advocacy Groups (PAGs) and the industry understand each other better and create effective working relationships. Visit the link below to learn about the 5 key things patient advocacy groups should know about biopharmaceutical companies: https://lnkd.in/eAgj5Vu2
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We are just one week away from Rare Disease Day! Be on the lookout next week for our special podcast episode during which Angela Wheeler, President of Insight US at Lumanity and Dr. Karin Hoelzer, Director of Policy and Regulatory Affairs at the National Organization for Rare Disorders (NORD) discuss opportunities for pharmaceutical companies to work with and support rare disease communities. Discussion highlights include the importance of: - continued support for the development of rare disease treatments - making a push towards more equitable clinical trial populations - focusing on how we can reduce the barriers to access - bringing in the patient perspective and patient voice in every step of the drug development process #rarediseaseday #rarediseases #raredisorders #patientvoice #patientadvocacy #rarediseaseday2024
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We are just one week away from Rare Disease Day! Be on the lookout next week for our special podcast episode during which Angela Wheeler, President of Insight US at Lumanity and Dr. Karin Hoelzer, Director of Policy and Regulatory Affairs at the National Organization for Rare Disorders (NORD) discuss opportunities for pharmaceutical companies to work with and support rare disease communities. Discussion highlights include the importance of: - continued support for the development of rare disease treatments - making a push towards more equitable clinical trial populations - focusing on how we can reduce the barriers to access - bringing in the patient perspective and patient voice in every step of the drug development process #rarediseaseday #rarediseases #raredisorders #patientvoice #patientadvocacy #rarediseaseday2024
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We are just one week away from Rare Disease Day! Be on the lookout next week for our special podcast episode during which Angela Wheeler, President of Insight US at Lumanity and Dr. Karin Hoelzer, Director of Policy and Regulatory Affairs at the National Organization for Rare Disorders (NORD) discuss opportunities for pharmaceutical companies to work with and support rare disease communities. Discussion highlights include the importance of: - continued support for the development of rare disease treatments - making a push towards more equitable clinical trial populations - focusing on how we can reduce the barriers to access - bringing in the patient perspective and patient voice in every step of the drug development process #rarediseaseday #rarediseases #raredisorders #patientvoice #patientadvocacy #rarediseaseday2024
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We are just one week away from Rare Disease Day! Be on the lookout next week for our special podcast episode during which Angela Wheeler, President of Insight US at Lumanity and Dr. Karin Hoelzer, Director of Policy and Regulatory Affairs at the National Organization for Rare Disorders (NORD) discuss opportunities for pharmaceutical companies to work with and support rare disease communities. Discussion highlights include the importance of: - continued support for the development of rare disease treatments - making a push towards more equitable clinical trial populations - focusing on how we can reduce the barriers to access - bringing in the patient perspective and patient voice in every step of the drug development process #rarediseaseday #rarediseases #raredisorders #patientvoice #patientadvocacy #rarediseaseday2024
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Are you attending the World Orphan Drug Congress April 23 - 25th in Boston? If you haven't made a decision yet, here are 3 reasons to attend: 1. #1 Networking opportunity in the rare disease and orphan drug space: The event brings together key stakeholders from across the orphan drug ecosystem, including pharmaceutical companies, biotechs, patient advocacy groups, regulatory agencies, and investors. Networking at the event provides attendees with the chance to forge valuable connections, collaborate on projects, and explore potential partnerships that can drive innovation and advance research in orphan drug development. 2. Access to Industry Insights and Expertise: The event features 3-days of insightful and inspiring presentations, keynote sessions, workshops, roundtables, and so much more led by leading experts and thought leaders in the field of rare diseases and orphan drugs. 3. Learning and Education: whether you’re a researcher clinician, industry executive, or policymaker, WODC will enhance your knowledge base, deepen your understanding of rare diseases, and keep you up to date on the latest advances in orphan drug development and patient care. And if you need another reason, I'll be there and I'd love to connect with you! If you are planning to attend, leave me a comment and let's connect!! #raredisease #rarediseases #rareaccessactionproject #WODC #smallbiopharma
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Mega proud to be part of this wonderful initiative. If you are involved in a partnership between biopharmaceutical companies and patient organisations, there is still time to register to take part via the link below!! Partnerships can be in any of the following: 💗Communications 📢 Advocacy 🌐Market Access 🔬Clinical trials 🧪R&D #patientadvocacy #marketaccess #healthcarecommunications
The end is fast approaching! Just 1 day to go until registrations close for the Patient Partnership Index 2023. If you would like to showcase your involvement in a partnership between biopharmaceutical companies and patient organisations across communications, advocacy, market access, clinical trials, or R&D, register now to submit an entry. Entries can be led by either partner and will be judged against a bespoke metric developed in partnership with industry and patient organisations to award Gold, Silver or Finalist standards. Entries to the Index close at 23:55 on Friday 26th April, so register now to receive an entry form, and ensure your partnerships get the recognition they deserve. The registration form, alongside FAQs and insights from last year’s Index, can be found via the link in comments. If you have any questions or require further support to get your entry (or entries) in by Friday, please reach out to the PPI team at info@patientpartnershipindex.co.uk. #clinicaltrials #marketaccess #researchanddevelopment #patientadvocacy #healthcarecommunications
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Global Head, Patient Informed Development & Health Value Translation at Sanofi. Chair PALADIN Consortium and co-chair of the Reflections clinical trial D&I collective Certified WSET Level 3 in wines
Excited to share!!! The PALADIN-Consortium has launched its first set of resources, available free of charge, to organizations collaborating on medicines development. It has been an astonishing first year where in a short time, two dozen organizations representing biopharma and patient advocacy, came together to co- create the consortium, identified what was needed to support more efficient US focused collaborations and produced this initial set of foundational deliverables. This launch is just the start of great things we plan to deliver with the aim to transform the pace of medicines development. There are a plethora of excellent frameworks, educational platforms, and other resources available in the public domain, however, it is a challenge to understand what exists and easily find where the information is located. The central repository of resources serves as a consolidation of helpful links to the great work performed by various entities. Thank you to the organizations who have agreed to have their information posted. PALADIN is honored to be able to help bring visibility to your work. Others are welcomed to reach out and have their work shared in this forum. Teams can also stuggle to understand how to initiate a collaboration and that can lead to inaction or delays. The co-created frequently asked questions and playbook can serve as a support to any organization looking for quick answers related to ‘how to’. Understanding best practices related to clinical trial participation, and diversity & inclusion, are essential to transforming the pace of medicines development and the Consortium workstreams have gathered more than 100 sources that can be leveraged. Consolidation and transparency can reduce the probability of time being spent ‘reinventing the wheel’ and enable prioritization of solutions that work! These initial foundational resources hope to put time, and resources, back where it can be used on high impact actions and play a role in transforming the pace of medicines development. We are just scratching the surface and are excited for Year 2! #paladinconsortium #patientcentricity #sanofistories Tufts Center for the Study of Drug Development Lisa La Luna Susan G Koman Foundation Accelerated Cure Project for Multiple Sclerosis Aimed Alliance Allergy & Asthma Network American Kidney FundAstellas Pharma US AstraZeneca Black Health Matters Bristol Myers Squibb Cancer Support Community COPD Foundation CSL Daiichi Sankyo, Inc. Merck The Michael J. Fox Foundation for Parkinson's Research National Alliance for Caregiving National Bleeding Disorders Foundation Novo Nordisk Pediatric Dermatology Research Alliance - PeDRA Pfizer Sanofi Takeda Tigerlily Foundation Opus Genetics BioNTech SE
The PALADIN Consortium announces the release of a Playbook and a Repository of Resources for patient advocacy groups (PAG) and biopharmaceutical companies to use in optimizing their collaborations. To read the full press release, visit: https://lnkd.in/gy_yGyRk
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