Several EU funded projects in neuromuscular diseases have provided a strong framework for this disease area to benefit from these new initiatives, but too often the scientists and clinicians involved in the basic and applied research are not aware of the parallel activities occurring in the public ...
Topic:UK-China Partnership in Tackling Rare Disease Challenges Globally 中英携手应对罕见病领域的挑战 Moderator 主持人: Linguo, LI, Senior Researcher, Public Policy Research Centre of Rare Diseases, CORD 李林国,蔻德罕见病中心(CORD)公共政策研究中心项目负责人 Panellists 嘉...
Our track record in rare disease speaks for itself. For over 30 years, we’ve been discovering and developing therapies that transform the lives of families living with rare diseases. DNA Improving Lives Through Partnership Our partnerships focus on disorders with well-defined mechanisms and high un...
Born out of UCB's commitment to the rare disease community and a recognition of the current progress and challenges in rare disease policy, Aspire4Rare engages a multi-disciplinary group of experts in rare diseases from policy, health, research, and patient advocacy backgrou...
He was a lead person for the advocating National Rare Disease policy. He is still working hard in campaigning for an optimum Rare Disease policy which will improve the lives of many. He has conceived a first of it’s kind Mass Awareness Walk/Run in India, Known as RACEFOR7 for the awar...
Transposition and implementation of EU rare disease policy in Eastern Europe Introduction: 袗 series of European Union (EU) political decisions have made rare diseases one of the cornerstones of the common European health policy. Ad... AV Pejcic,G Iskrov,R Raycheva,... - 《Expert Review of ...
China has dedicated over ten years to improving the conditions for rare disease patients in the country. The latest policy measure was released in May this year, the Center for Drug Evaluation (CDE) providing a set of guidelines guiding companies towards a greater degree of patient-centric resear...
Rare Disease04 October 20242 mins read Looking after a loved one with Progressive Familial Intrahepatic Cholestasis: Francesca’s Story Rare Disease12 September 20244 mins read Partnering for Progress: The Importance of Collaboration in Primary Biliary Cholangitis (PBC) Awareness ...
“Rare diseases are a global health priority,” says Carina Righetti, Director of the Janssen Pharmaceutical Companies ofJohnson & Johnson’s Global Market Access and Policy, Rare Diseases. “People living with a rare disease deserve accurate diagnosis and timely access to treatment just as people ...
In 2021, Shenzhen implemented an outpatient-specific disease policy, which included seven rare diseases like hemophilia, pulmonary hypertension, and multiple sclerosis in outpatient-specific disease treatment. The higher reimbursement...