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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Last week, Adam Feuerstein of STAT+ highlighted the complex relationships between patient organizations and pharmaceutical companies. This story emphasizes the need for industry transparency, the independence of advocacy organizations, and the respect for patients contributing to research. Rx4good's Chief Patient Advocate and SVP, Heidi Schultz Adams, shares her insights on our blog. Read more here: https://shorturl.at/9USy7 and sign up for our Good4Patients newsletter to keep up with the latest.
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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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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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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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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 [email protected]. #clinicaltrials #marketaccess #researchanddevelopment #patientadvocacy #healthcarecommunications
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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 [email protected]. #clinicaltrials #marketaccess #researchanddevelopment #patientadvocacy #healthcarecommunications
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