Agenda

Saudi Rare Diseases

Session I

Rare diseases in KSA: Addressing the Un-met needs

  • 13:00 pm - 13:25 pm

    Dr. Mariam Al Eissa
    and Dr. Mohammad Al Muhaizea

    The Saudi Barometer on Rare diseases: the long Journey to a Rare Diseases Diagnosis

  • 13:25 pm – 14:00 pm

    Dr. Alessandra Ferlini and Dr. Amal Hashem

    Advancing Genomics in Rare Disease Diagnosis, Global and Local Perspective

  • 14:00 pm – 14:25 pm

    Dr. Tareq AlQuresheh

    Evolving Regulatory Environment of Orphan Drugs in KSA

  • 14:30 pm – 15:00 pm

    Dr. ""

    Clinical Trials in Rare Diseases: Opportunities & Challenges

Session II

Establishing a Value based access & reimbursement ecosystem for RDs in KSA

  • 15:00 pm - 15:25 pm

    Dr. Sheela Upadhyaya
    and Prof. Ahmed AlJedai

    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 AbdulAziz Janahi
    and Mr. Mark Dant

    The Voice of Rare Disease Patients; How to Incorporate?

Session III

Accelerating Innovation in Rare diseases

  • 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

  • 17:25 pm – 17:50 pm

    Dr. Durhane Wong- Rieger

    Building Blocks for a Rare Disease Center of Excellence

  • 17:55 pm – 18:30 pm

    Panel:

    What it takes to develop a Rare Disease MoonShot program in KSA?



OUR SPEAKERS

  • Dr. Hajer Almudaiheem
    Dr. Hajer Almudaiheem

    PharmD, MSc

    Dr. Al-Mudaiheem is an Advisor and Assistant Deputy Minister for Therapeutic Supportive Services, MOH, and Director of Drug Policy and Regulation Division. She is responsible for MoH formulary management and was recently appointed as Drug Policy and Regulation Manager and is a Board member of the Pharmacy Profession Society under SCFHS and of the Saudi Clinical Pharmacy Society.

  • Professor Ahmed Al Jedai
    Prof. Ahmed H. Aljedai

    Pharm.D., MBA, BCPS, FCCP, FAST, FCCP, FASHP

    Prof. Aljedai is the founding president of the Saudi Society of Clinical Pharmacy (SSCP), Riyadh, Saudi Arabia. He currently is the A. Deputy Minister for Therapeutic Affairs, Ministry of Health, Riyadh, Saudi Arabia. He is also a Professor at Al-Faisal University, School of Medicine and Pharmacy and the editor-in-chief of the Saudi Journal of Clinical Pharmacy.

  • Dr. Marwan Abdulaziz Janahi
    Dr. Marwan Abdulaziz Janahi

    Co-Founder of Ana Fareed PAG

    Dr. Janahi co-founded Ana Fareed, a licensed health consultancy for advancing and revolutionizing the rare disease patient advocacy scenery in the GCC region. Adjacent Roles Founding Partner of Advance Health (2018 till Present) Chairman of UAE Pharma Business Group (2022 to Present) Past Chairman of UAE Rare Disease Society (2021 to 2022) Marwan holds a Bachelor’s degree in Business Administration from the University of Texas, USA and has completed the Future Leaders Program for UAE nationals in 2007 and Developing General Management Potential from Cranfield University in 2008. He also graduated from a program on general education from the American University of Dubai (AUD) and successfully finished the INSEAD – UAE Consortium for Executive Development Program in September 2015.

  • Dr. Tariq H. Al Qurayshah
    Dr. Tariq H. Al Qurayshah

    Pharm D

    Dr. Al Qurayshah, is a Scientific Evaluation Expert at Saudi FDA with 15 years of experience. His primary responsibilities include leading efficacy and safety of oncology products. He is managing Orphan Drugs Designation project.

  • Prof. Majid Alfadhel
    Prof. Majid Alfadhel

    MD, MHSc, SSC-Ped, ABHS(CH), FCCMG

    Prof. Alfadhel is the Deputy Executive Director of King Abdullah International Medical Research Centre, and Chairman of Genetics and Precision Medicine Department (GPM), Director of Medical Genomic Research Lab, King Saud Bin Abdulaziz University for Health Sciences.

  • Prof. Majid Alfadhel
    Dr. Mariam Mohammed AlEissa

    PhD

    Dr. Mariam is Head of the Molecular Genetics Laboratory at the Public Health Authority and Adjunct Assistant Professor at Alfaisal University's College of Medicine and a Principal Investigator (PI) at Alfaisal's AI Center and Ibn Khaldun Fellow at MIT's McGovern Institute for Brain Research in Cambridge, MA. Her areas of research include Population genetics, Genetics engineering and Bioinformatics.

  • Prof. Majid Alfadhel
    Prof. Mohammad Al-Muhaizea

    MD

    Prof. Al-Muhaizea is a Professor at Alfaisal University, College of Medicine and a Consultant Pediatric Neurologist at King Faisal Specialist Hospital & Research Centre, Riyadh, Saudi Arabia. He has been practicing as pediatric neurologist with expertise in pediatric neuromuscular disorders, neuro-disability, and movement disorders. He is the founding chair of the National Saudi Pediatric Neurology Residency Program. Previously, he was the founding chair for the Saudi Pediatric Neurology training program. Currently, he serves as the chair of the examination committee under the Saudi Commission for Health specialties in Saudi Arabia.

  • Dr. Alessandra Ferlini
    Dr. Alessandra Ferlini

    Associate Professor in Medical Genetics

    Associate Professor in Medical Genetics, Director of the section of Medical Genetics at the University of Ferrara (Italy), and coordinator of the EU funded BIO-NMD project. She has accomplished profound research experience at the Universities of Bologna, Padova, Milan and Modena and published more than 120 scientific articles in international magazines.

  • Dr. Amal Al Hashem
    Dr. Amal Al Hashem

    Consultant Clinical Genetics

    Consultant Clinical Genetics, Head of Division Medical Genetics, Pediatric Departmen, Prince Sultan military Medical City, Riyadh, KSA

  • Dr. Manish Kohli
    Dr. Manish Kohli

    MD, MPH, MBA, FHIMSS, FAAFP

    Presently, he is the CEO of Beyond Horizon Health, and serves as Chief Digital Health Officer and Head, Global Humanitarian Programs, Securra Health and a Fellow of both, Health Information and Management Systems Society (HIMSS) and American Academy of Family Physician and a Diplomate of, both, American Board of Preventive Medicine- Clinical Informatics and the American Board of Family Medicine.

  • Dr. Louise Schaper
    Dr. Louise Schaper

    PhD FAIDH FIAHSI CHIA BScOT(Hons)

    Dr. Schaper is the CEO of the Australian Institute of Digital Health, holds a PhD in health informatics and is a Fellow of the International Academy of Health Sciences Informatics and the AIDH and is an in-demand speaker and writes for academic and industry publications.

  • Dr. Durhane Wong-Rieger
    Dr. Durhane Wong-Rieger

    PhD

    Dr. Wong-Rieger is the Chair of Rare Disease International, Board member of Asia Pacific Rare Disease International, member of the Editorial Board of The Patient- Patient Centered Outcomes Research, member of the Global Commission to End the Diagnosis Odyssey for Rare Diseases and member of Health Technology Assessment International Patient /Citizen Involvement Interest Group.

  • Mr. Mark Dant
    Mr. Mark Dant

    Executive Director, Ryan Foundation, Inc.

    Mr. Dant is the former Board Chair of the of the Washington DC based EveryLife Foundation for Rare Diseases and the former President and CEO of the National MPS Society. He founded the Ryan Foundation in 1992 shortly after their only child Ryan was diagnosed with MPS I.

  • Dr. Sheela Upadhyaya
    Dr. Sheela Upadhyaya

    Life Sciences Consultant - Specializing in Rare Disease

    She is an independent consultant to the life sciences industry having been in healthcare for over 25 years with the last 15 in rare diseases and commissioned rare disease service provision for NHS England and led the NICE Highly Specialized Technology program and has co-authored several papers that discuss challenges in rare diseases and HTA methods for assessing the value of orphan medicines and presented at many conference issue panels on the subject.

Gold Sponsors



Silver Sponsors

Saudi Rare Diseases

Rare Diseases International is the global alliance of Persons Living with a Rare Disease and their families.. Learn More >>>

https://carexso.com/
Saudi Rare Diseases © Copyright 2023 Riyadh Home