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Indo-US Organization for Rare Diseases

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Nonprofit Overview

Mission: Our mission is to: • Advocate for the inclusion of the Indian subcontinent in global clinical trials • Connect rare disease patients in India & US with patient advocacy groups, research, clinical trials & international consortia • Collaborate for public health policy development & implementation between US, India & other countries • Bring together stakeholders of rare diseases through national & international conferences • Facilitate cross-border research collaborations for genetic disorders

Target demographics: the rare disease community in India, US, and globally

Geographic areas served: USA, India and worldwide

Programs: 1. Patients Alliance Membership Program, 2. Research Programs, 3. Education & Outreach Programs, 4. International Diversity Rare Advocacy Initiatives, and 5. Roar4Rare

Community Stories

11 Stories from Volunteers, Donors & Supporters

6

Professional with expertise in this field

Rating: 5

Great organization that is focused on collaboration between USA and India rare disease patient advocacy organizations. IndoUSRare helped make a connection to doctors in India that were aware of my rare disease. This is just the start and networking is key in the rare disease space. IndoUSRare is a great facilitator and just getting started!

Sai K.1

Professional with expertise in this field

Rating: 5

IndoUSRare is not only an organization but also a community that is transforming the definition of rare diseases. My association with the IndoUSRare team is very unique and our bonding is very strong. I was part of their panelist in the special webinar and also took part in various conversations to spread awareness about rare disease and their treatments. I feel Harsha and the team doing such a great job promoting wellness and support systems for a large community and bridging the gap between India and US to fight all barriers together collectively. I am glad to become its tiny part and I wish them all the best for all future endeavors.

3

Volunteer

Rating: 5

Indo-US Organization for Rare Diseases is a nonprofit that is filled with dedicated individuals who spend their time and money raising awareness for rare diseases. It is a community of like-minded individuals who selflessly work for this great cause. In my time volunteering for them, I primarily focused on the advocacy aspect of things. Their advocacy is well planned and well thought out and has definitely helped cause change.

2

Volunteer

Rating: 5

A team of dedicated members determined to make an impact in the lives of people with Rare diseases. Have never had more fun discussing and brainstorming for new ideas and innovative methods for different programs. With a challenging mission, Indo-US Rare is led by a team of visionary leaders, who are committed to work for the people. I am humbled to have been able to work with them.

3 Archisman M.

Professional with expertise in this field

Rating: 5

Indo-US Rare is a very passionate team. The members are not just technically sound, they are here to bring in strategic change through effective collaboration for rare diseases. We, as a partner organization, have been working closely with them for several months now. The collaboration has been a great co-learning experience. We have also managed to leverage each-other's networks. The Indo-US Rare team is sincere and committed to its vision and this instils trust in the relationship we share. Our best wishes the team as it continues to work for the betterment of people with Rare Diseases in India and in the US.

3

Volunteer

Rating: 5

I am a full-time volunteer for the IndoUSrare organization, and I have had the opportunity to work with the team. All are dedicated and sincere people and they are committed to helping rare disease patients by advocacy and collaboration for public health policy development & implementation. I have seen the organization strives to connect patients living with rare diseases in India and the USA with patient advocacy groups, research, clinical trials, and international Consortia such as IRDiRC, RDI, Global Genes, NORD, RARE-X, and UDNI.
It's not easy to work for a good cause but the people who work here are laser-focused on accelerating therapies for rare diseases and facilitating research collaborations for genetic disorders. Overall I would rate IndoUSrare as an outstanding organization that continues to help many people with rare diseases.

3

Volunteer

Rating: 5

I have been following the developments and progress IndoUSrare is making in the field of Rare Diseases. I am happy to see its commitments to the cause of rare diseases. I commend their mission of building collaborations between the East and West to accelerate therapies for rare disease patients globally.

3

Professional with expertise in this field

Rating: 5

Indo-US Organization for Rare Diseases is a unique organization that focusses on addressing the needs of Rare disease (RD) patients both in India and the US. This is particularly useful to the large Indian diaspora based in the US. A close friend of mine got huge help from the group when she seeked help for her son suffering from MPS2. Indo US Rare helped them to connect to Indian doctors and patient groups and helped them in identifying specific mutation. In general, what makes Indo US Rare a very unique organization and stand out among other NGOs working in rare disease domain is its focus on research, understanding of patient needs and deep understanding of the regions that it works on. It provides a huge opportunity for bilateral engagement bteween Indian and US rare disease community. This would help different stakeholders such as doctors , patients and other health professionals to engage, learn and collaborate to address the needs for patients living with RDs. The webinars and talks organized by IndoUS Rare have wide scope and provides meaningful exposure to know about experiences of RDs warriors and discuss important issues pertaining to RDs. I am very hopeful IndoUS Rare along with other RD organizations in India will help to strengthen the Rare disease ecosystem.

3

Client Served

Rating: 5

Any organisation is as good as human working there!
This comes out as an absolute truth when I talk about Indo-US Organization for Rare Diseases. The people associated are highly approachable and helpful. They guided me the best they could and even took an extra step to stay connected and keep checking up on me. I got a real share of commitment and dedication from the Indo-US team. Not only my doubts and queries were solved, but they also ensured further information on the requested query. Lastly, they helped me to connect with some really great people. I'm grateful that I contacted them. I'll always be cheering for the cause and their work!

3

Professional with expertise in this field

Rating: 5

The IndoUSrare team brings together years of experience from diverse backgrounds with a passion for helping rare disease patients globally.
Their vision and mission is commendable. Excited to work with IndoUSrare!

3

General Member of the Public

Rating: 5

IndoUSrare is passionately involved in advocating for rare disease community and bring more focus to it. Their level of commitment to the cause is displayed in their continuous work to improve the lives all in the rare disease community.