Inauguration of Chemical Pathology Section's Rare Disease Registry
Establishing a Rare Registry for Inherited Metabolic Disorders
Thursday August 31st, 2023 | 10 am to 12 pm
The Rare Links webinar series provided a platform where national and international experts shared knowledge and experience of newborn screening and diagnostics of inherited metabolic disorders in Pakistan.
- Understanding of the importance of a rare registry for inherited metabolic disorders (IMDs) for improving patient care, and research.
- Discussed practical steps and considerations for long-term sustainability and growth of the rare registry
- Discussed approaches to expanding the registry to include a broader range of rare IMDs and reaching a wider geographical area.
- Facilitated knowledge sharing, exchange experiences, and foster collaboration among participants
- Interactive Padelet Wall Discussions
- Panel Discussion with Experts
- Experience of Local Registry Development for Rare Diseases