​Inauguration of Chemical Pathology Section's Rare Disease Registry​​

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Rare Links 

Launch Event 

Establishing a Rare Registry for Inherited Metabolic Disorders​

Thursday August 31st, 2023 | 10 am to 12 pm 

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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.

Learning O​​utcomes

1. Understanding of the importance of a rare registry for inherited metabolic disorders (IMDs) for improving patient care, and research.
2. Discussed practical steps and considerations for long-term sustainability and growth of the rare registry
3. Discussed approaches to expanding the registry to include a broader range of rare IMDs and reaching a wider geographical area.
4. Facilitated knowledge sharing, exchange experiences, and foster collaboration among participants ​
   

Program​​ Highlights:

• Interactive Padelet Wall Discussions
• Panel Discussion with Experts
• Experience of Local Registry Development for Rare Diseases