Lumanity Strategy & Insight’s Post

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

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

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

In case you missed it, we released a special podcast episode in honor of Rare Disease Day. 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), discussed opportunities for pharmaceutical companies to work with and support rare disease communities. Discussion highlights included 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 Listen to the episode at #rarediseases #raredisorders #patientengagement #patientadvocacy #RareDiseaseDay #WeAreRare

In case you missed it, we released a special podcast episode in honor of Rare Disease Day. 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), discussed opportunities for pharmaceutical companies to work with and support rare disease communities. Discussion highlights included 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 Listen to the episode at #rarediseases #raredisorders #patientengagement #patientadvocacy #RareDiseaseDay #WeAreRare

#Raredisease #patients and families play a vital role at every step of #raredisease #drugdevelopment - from raising #research #funding and #awareness to establishing #patientregistries, collecting #data, and informing #clinicaltrial design, to informing #patientpreferences, the development of #clinicaloutcomeassessments #COAs and other #endpoints - and so much more. But, how can patients, #biomedicalresearchers, and the #biopharmaceutical industry partner effectively? We at #NORD, the National Organization for Rare Disorders, are thankful to FDA for funding our new educational series to help establish best practices and a shared understanding: Rare Disease Drug Development: What Patients and Advocates Need to Know. The second part of this series was released TODAY and covers a LOT of content from - #FDA's #regulatory review programs to #drugrepurposing, #expanded access, #labeling, and so much more. You can earn a total of 3 certificates - and participation is FREE for #patientadvocates! So sign up today at learn.rarediseases.org.  

Weekly Rare Update Partnerships and collaborations across sectors have the potential to create real change in all areas of healthcare, especially in rare diseases. The challenges associated with getting a diagnosis are amplified by NHS constraints, lack of awareness and an unclear diagnosis referral pathway. This ABPI report showcases several partnership examples and provides a simple framework or practical actions to build collaboration and lead to greater innovation in health. For the full report visit The Association of the British Pharmaceutical Industry (ABPI) https://lnkd.in/ekfSrXEY #innovation #collaboration

Two weeks left to register for our upcoming webinar. https://bit.ly/44WWTxt Our experts will share best practices for addressing the unique aspects of successful rare disease commercialization. Discuss the intricacies involved with aligning your organization across all critical functions. Ryan Subhan, MBA Emily Phillips #raredisease #patientexperience #pharma #biotech #launch #marketaccess #medicalcommunications #AskHerspiegel

A recent piece by the European Patients Forum nicely captures the real definition of Unmet Medical Needs in contrast to the definition used in the European Commission proposal for a directive on medicinal products for human use which is too narrow and is focused only on mortality and morbidity associated with the disease. The EPF article highlights that to foster therapeutic innovation in #EU and make sure that no one is left behind, the commission must consider metrics beyond mortality and morbidity such as patient experience and quality of life. The article further emphasizes on meaningful patient involvement in the process of pharmaceutical Research and Development, including patient participation in decision making, as well as consultation of patient representatives in each specific disease area. #europeanpatientsforum #innovation #unmetmedicalneeds #patientinvolvement #PPI #patientperspective