Dr. Mariam Al Eissa and Dr. Mohammed Al Muhaizae
The Saudi Barometer on Rare diseases: the Long Journey to a Rare Diseases Diagnosis
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THE SIGNAL TO NOISE RATIO:
A Saudi Ministry of Health Rare Diseases Moonshot Pledge
Friday, March 10 2023
13:00 PM till 18:30 PM KSA
About the Conference
The first initiative at the level of the Saudi Health System aimed to unify the health vision to create a road map so that all specialized professionals in the treatment of rare diseases join efforts to build the first center of excellence for the treatment of rare diseases.
Who should attend
Healthcare Stakeholders, Government representatives & officials, Pharmaceutical industry executives (Market Access, Government Affairs, Health Economics), Public & Private Health services providers, Health economists, Health Policy Experts, Healthcare Professionals, Nurses, Academics, Researchers
TOPICS
- Rare diseases in KSA: Addressing the Un-met needs.
- The Saudi barometer to Rare diseases.
- The Long Journey to a Rare disease diagnosis.
- Evolving Regulatory environment of Orphan drugs in KSA.
- Clinical trials in Rare diseases: Opportunities & Challenges.
- Establishing a Value based access & reimbursement ecosystem for rare diseases in KSA.
- HTA & reimbursement considerations for rare diseases: Global Á Local view.
- Next Generation Value based payment Strategies.
- Alternative Financing models & Early access schemes for Orphan drugs.
- The voice of rare disease patients; How to incorporate?
- Accelerating Innovation in Rare diseases..
- Digit-All in Rare Diseases: Common Themes & Needs.
- Artificial Intelligence driving Breakthroughs in Rare Diseases.
- Advancing Genomics in Rare disease diagnosis.
- Building Blocks for a Rare Disease Center of Excellence.
- Panel: What it takes to develop a Rare Disease MoonShot program in KSA?
Agenda
13:00 pm – 13:25 pm
13:25 pm – 14:00 pm Dr. Amal Hashem
Dr. Amal Hashem
and Dr. Alessandra Ferlini
Advancing Genomics in Rare Disease Diagnosis, Global and Local Perspective
14:00 pm – 14:25 pm
Dr.Tareq AlQurayshah
Evolving Regulatory Environment of Orphan Drugs in KSA SFDA
14:30 pm - 15:00 pm
Prof. Majid Alfadhel
Clinical Trials in Rare Diseases: Opportunities & Challenges
15:00 pm – 15:25 pm
Prof. Ahmed Al Jedai and Dr. Sheela Upadhyaya
HTA & Reimbursement Considerations for Rare Diseases: Global & Local View
15:25 pm – 15:45 pm
Dr. Hajer Al-Mudaiheem
Next Generation Value-Based Payment Strategies
15:45 pm – 16:10 pm
Prof. Ahmed Al Jedai
Alternative Financing Models & Early Access Schemes for Orphan Drugs
16:10 pm – 16:30 pm Dr. Marwan A. Janahi
Dr. Marwan A. Janahi
and Mr. Mark Dant
The Voice of Rare Disease Patients; How to Incorporate?
16:35 pm – 17:00 pm
Dr. Louise Schaper
Digit-All in Rare Diseases: Common Themes & Needs
17:00 pm – 17:20 pm
Dr. Manish Kohli
Artificial Intelligence Driving Breakthroughs in Rare Diseases
17:20 pm – 17:50 pm
Dr. Durhane Wong- Rieger
Building Blocks for a Rare Disease Center of Excellence
17:50 pm – 18:30 pm
Panel: What it takes to develop a Rare Disease MoonShot program in KSA?
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Saudi Rare Diseases.
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