Our Vision and Mission

Our Vision

Our vision is to educate, empower and advocate for diverse patients with rare diseases in the US, India, and globally by building collaborative bridges between the western and eastern geographic silos for stakeholders of rare diseases to maximize diversity, equity, and inclusion in research and development for accelerating the development of diagnostics and therapies.

Our Mission

Our mission is to help establish and sustain patient-centric education, awareness, training, research, and engagement programs aligned with the FDA’s patient-focused drug development (PFDD) paradigm in the following ways:

  1. Diversity Patients Alliance Program: Advocate for global diversity, equity, and inclusion in clinical trials and improve access to clinical research as a care option for patients living with rare diseases. Collaborate for public health policy development & implementation such as Rare Disease and Orphan Drug Policies between US, India, and other countries.
  2. Tech-enabled Patients Concierge: Connect patients living with rare diseases in India, the USA, and globally with clinical trials, patient advocacy groups, research, and international Consortia such as Global Genes, IRDiRC, NORD, RARE-X, RDI, and UDNI.
  3. Research Programs: Conduct and facilitate cross-border research collaborations for genetic disorders.
  4. Corporate Diversity Advisory Council (CDAC): will bring together biotech, pharma, and medical device sponsors, diagnostic companies, and other stakeholders of the life science industry as members of this council to set the agenda for advocacy and pre-competitive cooperation.
  5. National and international conferences: Bring together stakeholders of rare diseases.

 

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