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Combating Rare Diseases by Fostering Cross-Border Research, Collaborations, Data Sharing, and Clinical Trials Globally

About Us

About Us – Indo-US Organization for Rare Diseases (IndoUSrare) is a non-profit 501(c)(3) tax-exempt organization on a mission to accelerate access to therapies for rare diseases by fostering collaborations between stakeholders in the USA and India.

Our programs bridge the critical gaps of the under-representation of the Indian diaspora in global clinical trials for rare disease treatment development and enable them access to critical life-saving therapies.

Rare Disease Organization - IndoUSrare's Global Collaboration

Bridging gaps in rare disease care by fostering U.S.-India collaborations for increased access to treatments and global clinical trial opportunities.

65

Patient alliance

Member Foundations

500+

Rare Diseases

Represented

160

Patients Supported

Through Concierge

50+

Countries

Accross 4 Continents

38

Global Events

Hosted

Policy inputs

to US FDA and Indian Govt on data sharing and diversity

20

Global Partnership

40+

Publication and Media

Mentions

Help Our Cause

Programs

Building bridges between the USA and India to accelerate rare disease research and access to life-saving therapies.

Resources

Stay informed with the latest news, press, and updates from IndoUSrare.

Frequently Asked Questions (FAQs) - Indo-US Organization for Rare Diseases

What is the Indo-US Organization for Rare Diseases (IndoUSrare)?
Indo-US Organization for Rare Diseases (IndoUSrare) is a non-profit organization dedicated to advancing research, advocacy, and collaboration in the field of rare diseases through Indo-US partnerships. Our mission is to address the challenges faced by individuals and families affected by rare diseases by fostering international collaborations between stakeholders in India and the United States.
Rare diseases, also known as orphan diseases, are medical conditions that affect a small percentage of the population. These diseases are often chronic, debilitating, and life-threatening, and they pose significant challenges for diagnosis, treatment, and access to healthcare.

The goals of IndoUSrare include:

There are several ways to get involved with IndoUSrare, including:

While IndoUSrare does not provide direct patient services, we collaborate with patient advocacy groups, healthcare organizations, and other stakeholders to support individuals and families affected by rare diseases. We advocate for improved access to healthcare, resources, and support services for rare disease patients and families.

IndoUSrare supports rare disease research through:

Yes, IndoUSrare offers educational resources, webinars, and training programs on various aspects of rare diseases, including diagnosis, treatment, research, and advocacy. Our goal is to enhance knowledge and awareness about rare diseases among researchers, clinicians, patients, and the general public.

Stay informed about IndoUSrare's activities, events, and initiatives by:

IndoUSrare is an independent non-profit organization and is not affiliated with any government agencies. However, we collaborate with government agencies, research institutions, patient advocacy groups, and other stakeholders to advance our mission and goals.
For more information about Indo-US Organization for Rare Diseases, you can contact us via email at info@indousrare.org or through our website’s contact form. We welcome inquiries, collaboration proposals, and feedback from individuals and organizations interested in rare diseases and Indo-US partnerships.

Meet The Team

Crossing borders, building hope — meet the global team behind IndoUSrare.

Learn more about Membership Benefits

A global alliance of life science innovators advancing rare disease diagnostics and therapies through patient-industry collaboration