Email: contactus@ordiusa.org

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
USA
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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