1-3 of 3
Keywords: Rare disease
Close
Save search
Follow your search
Access your saved searches in your account
Would you like to receive an alert when new items match your search?
Close Modal
Sort by
Journal Articles

Redefining Rare Disease Care in the Digital Age: Insights and Key Takeaways from a Digital Health Symposium Focused on Empowering Rare Disease Communities

Open Access
Subject Area:
General Medicine
Emily Lewis, Anuradha Dayal, Ron Li
Journal: Biomedicine Hub
Biomed Hub (2024) 9 (1): 38–44.
https://doi.org/10.1159/000536274
Published Online: 10 April 2024
...Emily Lewis; Anuradha Dayal; Ron Li At the Stanford-UCB Rare Disease Digital Health Symposium held in Stanford, California, on September 8, 2023, researchers, clinicians, payers, thought leaders, and rare disease caregivers and advocates discussed the current state of care delivery and future...
View articletitled, Redefining Rare Disease Care in the Digital Age: Insights and Key Takeaways from a Digital Health Symposium Focused on Empowering Rare Disease Communities
Open the PDF for Redefining Rare Disease Care in the Digital Age: Insights and Key Takeaways from a Digital Health Symposium Focused on Empowering Rare Disease Communities in another window
Journal Articles

Time for Change? The Why, What and How of Promoting Innovation to Tackle Rare Diseases – Is It Time to Update the EU’s Orphan Regulation? And if so, What Should be Changed?

Open Access
Subject Area:
General Medicine , Ophthalmology , Genetics , Pathology and Cell Biology , Geriatrics and Gerontology , Pharmacology , Dermatology , Psychiatry and Psychology , Immunology and Allergy , Pneumology , Women's and Children's Health , Further Areas , Audiology and Speech , Neurology and Neuroscience , Endocrinology , Nephrology , Public Health , Gastroenterology , Cardiovascular System , Oncology
Denis Horgan, Barbara Moss, Stefania Boccia, Maurizio Genuardi, Maciej Gajewski, Gabriele Capurso, Pierre Fenaux, Beatrice Gulbis, Mariangela Pellegrini, Maria del Mar Mañú Pereira, Victoria Gutiérrez Valle, Iñaki Gutiérrez Ibarluzea, Alastair Kent, Ivana Cattaneo, Beata Jagielska, Ivica Belina, Birute Tumiene, Adrian Ward, Marisa Papaluca
Journal: Biomedicine Hub
Biomed Hub (2020) 5 (2): 1–11.
https://doi.org/10.1159/000509272
Published Online: 17 July 2020
...; Birute Tumiene; Adrian Ward; Marisa Papaluca Since developments are global in the healthcare arena, more should be done to align EU and other big markets’ regulatory practices for rare disease patients. Notwithstanding efforts and cooperation between the US and EU aimed to harmonize their strategic plans...
View articletitled, Time for Change? The Why, What and How of Promoting Innovation to Tackle Rare Diseases – Is It Time to Update the EU’s Orphan Regulation? And if so, What Should be Changed?
Open the PDF for Time for Change? The Why, What and How of Promoting Innovation to Tackle Rare Diseases – Is It Time to Update the EU’s Orphan Regulation? And if so, What Should be Changed? in another window
Journal Articles

From the Data on Many, Precision Medicine for “One”: The Case for Widespread Genomic Data Sharing

Open Access
Subject Area:
General Medicine , Ophthalmology , Genetics , Pathology and Cell Biology , Geriatrics and Gerontology , Pharmacology , Dermatology , Psychiatry and Psychology , Immunology and Allergy , Pneumology , Women's and Children's Health , Further Areas , Audiology and Speech , Neurology and Neuroscience , Endocrinology , Nephrology , Public Health , Gastroenterology , Cardiovascular System , Oncology
Serena Scollen, Angela Page, Julia Wilson, on behalf of the Global Alliance for Genomics and Health
Journal: Biomedicine Hub
Biomed Hub (2017) 2 (Suppl. 1): 1–7.
https://doi.org/10.1159/000481682
Published Online: 21 November 2017
... (Australian Genomics) are integrating genome sequencing into routine healthcare for the long-term benefit of human health. Both are focusing initially on rare diseases and cancer. The 100,000 Genomes Project will ultimately sequence whole genomes from around 70,000 individuals - patients in the UK NHS system...
View articletitled, From the Data on Many, Precision Medicine for “One”: The Case for Widespread Genomic Data Sharing
Open the PDF for From the Data on Many, Precision Medicine for “One”: The Case for Widespread Genomic Data Sharing in another window