Indo US Organization for Rare Diseases

Building Collaborative Bridges between the East and West

aka IndoUSrare   |   Herndon, VA   |  https://indousrare.org

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 info

2020

Founder and Chairman

Dr. Harsha Karur Rajasimha

Main address

13687 Neil Armstrong Ave

Herndon, VA 20171 USA

Show more contact info

EIN

84-3794099

NTEE code info

Public Health Program (E70)

IRS filing requirement

This organization is required to file an IRS Form 990-N.

Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

- 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

SOURCE: Self-reported by organization

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

Population(s) Served

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

Population(s) Served

Education & Outreach Programs include:
- IndoUSrare Webinar series
- Monthly Newsletter
- Omnichannel outreach via the organizational website & social media channels

Population(s) Served

International Diversity Rare Advocacy Initiatives aim to represent the rare disease & Asian-Indian community at national & international forums

Population(s) Served

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

Population(s) Served

Where we work

Our results

SOURCE: Self-reported by organization

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

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

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.

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

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.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    Our Patient Alliance members, our partners, rare disease patients and researchers.

  • How is your organization collecting feedback from the people you serve?

    Focus groups or interviews (by phone or in person), Community meetings/Town halls,

  • 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,

  • 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

  • With whom is the organization sharing feedback?

    Our staff, Our board,

  • 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,

  • 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

Indo US Organization for Rare Diseases
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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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Indo US Organization for Rare Diseases

Board of directors
as of 3/10/2022
SOURCE: Self-reported by organization
Board co-chair

Dr. Harsha Rajasimha

Jeeva Informatics Solutions Inc.


Board co-chair

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

SOURCE: Self-reported; last updated 03/23/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
Asian American/Pacific Islanders/Asian
Gender identity
Male, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data