Indo US Organization for Rare Diseases
Building Collaborative Bridges between the East and West
Mission
IndoUSrare is on a mission to accelerate affordable orphan therapies for rare diseases by catalyzing cross-border collaborations between stakeholders of rare disease in the USA and India. Our initiatives have been developed to educate, empower and advocate for patients with rare diseases in the US, India, and globally by building collaborative bridges between the western and eastern geographic silos, with the aim of accelerating the development of diagnostics and therapies.
Ruling year
2020
Founder and Chairman
Dr. Harsha Karur Rajasimha
Main address
13687 Neil Armstrong Ave
Herndon, VA 20171 USA
EIN
84-3794099
NTEE code
Public Health Program (E70)
IRS filing requirement
This organization is required to file an IRS Form 990 or 990-EZ.
Communication
Programs and results
What we aim to solve
- 97% of drug discovery & development happens outside of the Indian subcontinent; ~23% of the World's population lives in the Indian subcontinent. - Patient identification & recruitment into clinical trials is the biggest barrier in the development of therapies. - A majority of the FDA or EMA approved drugs are not commercialized in the low- and middle- income regions such as the Indian subcontinent. - Most of the large-scale long-term investments leading to the discovery & development of novel therapies happen in the Western World. - Recent trends indicate that most "low-hanging fruits" for novel drugs have been exhausted and novel therapies for rare diseases will require innovative solutions outside the traditional process. - Most biomedical & clinical research databases are filled with predominantly data of Caucasian origin. This needs to be updated with data from the genetically diverse population from the Indian Subcontinent.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Patients Alliance Membership Program
Through our Patients Alliance Membership (https://indousrare.org/program-info) program, we aim to connect patient foundations in the USA with patient groups and researchers with similar goals in India.
We are currently a coalition of 19 Patient Organizations representing over 500 Rare Diseases and 15000 patients across different countries
Key Values of the Program include:
Connecting patient foundations in the USA to cost effective preclinical research and resources in India
Connecting patient groups in the Indian subcontinent to the latest cutting-edge clinical research and resources in the USA
We have an extensive network of patients, patient groups, physicians, researchers, and other KOLs through which we can aid this process.
Program Activities include:
• Quarterly Patient Alliance Members meetings to engage Patients Alliance Members in working groups to take forward initiatives such as Advocacy, Education, and shared resources for research
• Informing patients about upcoming or ongoing clinical trials anywhere in the world for diseases represented by the member organizations
Research Programs
IndoUSrare Research Program includes:
- Research Corps program
- Exchange Corps program
- Rare Disease Prevalence and Incidence Study (upcoming)
- Collaborative initiatives with US & Indian institutions for rare disease education & short-term internships or exchange engagements
- Support of the development of relevant research articles & whitepapers
Education & Outreach Programs
Education & Outreach Programs include:
- IndoUSrare Webinar series
- Monthly Newsletter
- Omnichannel outreach via the organizational website & social media channels
International Diversity Rare Advocacy Initiatives
International Diversity Rare Advocacy Initiatives aim to represent the rare disease & Asian-Indian community at national & international forums
Roar4Rare
A walk/run event for the cause of over 350 million patients with rare diseases globally, a significant public health burden. This event is currently being conducted virtually.
Roar4Rare emphasizes the urgency of diagnosing patients with undiagnosed conditions and the need to bring new medicines for >93% of the rare diseases with no approved treatment. The Event's registrations and sponsorships are geared towards fundraising goals.
Currently, this event is being conducted virtually and will shift to in person events according to Covid-19 regulations
Where we work
External reviews
Our results
How does this organization measure their results? It's a hard question but an important one.
Total number of organization members
This metric is no longer tracked.Totals By Year
Related Program
Patients Alliance Membership Program
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
Our Patient Alliance has as its members, patient organisations from across the globe and represent over 500 rare diseases and 20000 patients world wide
Number of new grants received
This metric is no longer tracked.Totals By Year
Type of Metric
Input - describing resources we use
Direction of Success
Increasing
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
The vision of IndoUSrare is to educate, empower and advocate for diverse patients with rare diseases globally by building collaborative bridges between the western and eastern geographic silos for accelerating the next generation of diagnostics and therapies for rare and complex genetic diseases.
What are the organization's key strategies for making this happen?
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 USA, India and other countries.
2. Patient Concierge: Connect patients living with rare diseases in India, 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): to be launched in Q1 2022 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. Bring together stakeholders of rare diseases by organizing national and international conferences
What are the organization's capabilities for doing this?
1. Committed team of 7 board of directors, 9 advisory board members, 2 full time staff members, and numerous volunteering community engagement leaders to advance the vision and mission of IndoUSrare.
2. We undertake activities related to all our programs using our interactive organizational website with contact forms for various stakeholders such as patients, volunteers and industry and have subscriptions to key softwares and tools.
3. IndoUSrare has fully functional Workflows, Project timelines and plans, Design and logos for all programs.
What have they accomplished so far and what's next?
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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Who are the people you serve with your mission?
Our Patient Alliance members, our partners, rare disease patients and researchers.
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How is your organization collecting feedback from the people you serve?
Focus groups or interviews (by phone or in person), Community meetings/Town halls,
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How is your organization using feedback from the people you serve?
To identify bright spots and enhance positive service experiences, To inform the development of new programs/projects, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,
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What significant change resulted from feedback?
We are developing our Patient Concierge Program to provide a technologically enabled scalable platform for information assistance for patients with rare disease. We refined our workflow based on inputs from our partners and Patients Alliance at large, and held further consultation sessions with a few select individuals. This feedback has helped greatly improve our pipeline
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With whom is the organization sharing feedback?
Our staff, Our board,
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Which of the following feedback practices does your organization routinely carry out?
We collect feedback from the people we serve at least annually, We aim to collect feedback from as many people we serve as possible, We act on the feedback we receive,
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What challenges does the organization face when collecting feedback?
We don’t have the right technology to collect and aggregate feedback efficiently, Staff find it hard to prioritize feedback collection and review due to lack of time,
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
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Connect with nonprofit leaders
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- Analyze a variety of pre-calculated financial metrics
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- Compare nonprofit financials to similar organizations
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Indo US Organization for Rare Diseases
Board of directorsas of 03/10/2022
Dr. Harsha Rajasimha
Jeeva Informatics Solutions Inc.
Narayanan Govindarajan
UWorld
Frank Sasinowski
Hyman, Phelps & McNamara PC
Charles Andres
Greenberg Traurig, LLP
Reena Kartha
College of Pharmacy, University of Minnesota
Sundeep Agrawal
Colt Ventures
Organizational demographics
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
Race & ethnicity
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Gender identity
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Sexual orientation
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Disability
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