7th International Conference on Rare and Undiagnosed Diseases

Organization for Rare Diseases India (ORDI)

is pleased to invite you to

13th to 15th April 2019

Welcome Remarks

India Keynote Panel: 1 hr 30 minutes

Grand Challenges, Unmet Needs and Opportunities of Stakeholders of Rare Diseases (Speakers: Key Government Leaders from Indian agencies CSIR, ICMR, DBT, DGCI, Medical Geneticist, ORDI – patient perspectives)

  • Chairperson remarks
  • Understanding Rare and Undiagnosed Diseases: Incidence, Prevalence, Diagnosis, major categories, treatment options, clinical trials, and new born screening
  • Indian national RD policy highlights and current status
  • Excellence in Pediatrics Institute, USA
  • Organization for Rare Diseases India – A national umbrella organization for stakeholders of Rare Diseases in India
  • Panel Discussion and Q&A 

International Keynote Panel: 1 hr 30 minutes

Speakers from: NIH, IRDiRC, UDN, ICORD, EURORDIS, NORD, FDA, CORD, Singapore, Japan

  • Chairperson remarks
  • Best Practices for Rare Diseases: International Perspectives
  • It all began in 1983 with US Orphan Drug Act
  • EU perspective
  • Asian perspectives
  • Panel Discussion and Q&A 

Panel Session: New Born Screening and Diagnosis Panel for Rare and Undiagnosed Diseases

  • Chairperson remarks
  • New born screening: Need of the Hour in India
  • Early diagnosis (prenatal / neonatal)
  • Genetics/Genomics based diagnostics
  • Mass Spectrometry and biochemical tests
  • Diagnostic and NBS Industry Perspectives: Centogene, Strand Life Sciences, Neogen Labs, Sandor Labs, Medgenome, Perkin Elmer, etc.
  • Panel Discussion and Q&A

Panel Session: Treatments, Orphan Drugs, Clinical Trials and Diet/Nutrition

  • Chairperson remarks
  • The need for Orphan drugs act in India – What can we learn from International efforts?
  • BioPharma Challenges and Opportunities in India: Scientific, Health and Economic
  • Clinical trials, Accessibility of FDA/EMEA approved drugs in India (Challenges/Approaches).
  • Role of Nutrition in treating Certain Rare Diseases (Suggested Speaker: Vish Prakash, CFTRI, Mysore)
  • Industry Council: Pfizer, Genzyme, Shire, Reddy labs, Biocon, Astrazeneca, etc.
  • Panel Discussion and Q&A

Session: Patient/Families Stories and Perspectives ()

  • Importance/Role of Disease-Specific patient advocacy groups (PAGs)
  • Session on – Living with Rare Disease – Patient Stories
    • Patient with Lysosomal Storage Disorder – story and challenges (Prasanna Shirol)
    • Patient with Glycogen Storage Disorder – Reeti Mahobe?
    • Patient with 3 other rare disorders (IEM,
  • Panel Discussion and Q&A

DAY 2 

Session: National Health Policies and Frameworks for Rare Diseases ()

  • Chairperson remarks
  • Perspectives on creating national framework for addressing the unmet needs of the stakeholders of Rare diseases
  • Scientific, Medical and Economic challenges of rare diseases in India.
  • Engage leaders from Govt., Academia, Medical and Economics.
  • Panel Discussion and Q&A

Session: Research and Technologies Relevant to Rare Diseases ()

  • Chairperson remarks
  • Statistics and Data on prevalence of diseases
  • Noteworthy Scientific research projects
  • Noteworthy public health projects
    • New born screening study in Goa?
    • Can we find who else to invite here?
  • Role of Internet and Mobile technologies ()
    • Patient registries
    • Clinical trials management systems
    • Mobile apps for patients with disabilities
    • Wearable devices
  • Panel Discussion and Q&A

Session: Education and Awareness about Rare Diseases

  • Current Strengths and Weaknesses in Indian Medical Education (Speaker from MCE or a professor?)
  • Perspectives on Modifications Needed in Medical Education Curriculum in India
  • Continuing Medical Education for Practicing Physicians
  • Awareness programs for patients and general public on rare and inherited diseases
  • Panel Discussion and Q&A
Upcoming Events
From 21-October-2019
to 22-October-2019

Rare Diseases and Orphan Products Breakthrough Summit October 21-22, 2019 in Washington, D.C.

Marriott Wardman Park
2660 Woodley Rd. NW
Washington, District of Columbia 20008
From 29-February-2020
to 21-June-2020

RaceFor7USA 2020

1) Washington DC
2) SF Bay area, CA
3) Greenville, SC
4) Boston (Acton), MA
5) Frisco, TX

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