Indo-US Organization for Rare Diseases

I distinctly remembered the day, I met Harsha on Rare day disease (29th Feb 2024) and their mission, and decided to contribute as my elder sister is suffering from ultra rare disease named as KBG syndrome.
It's a great initiative and platform where everyone with same mission can collaborate . Collaboration is key. Together with Indo US rare, we can cross that bridge of gap and spread the word around the every corner of the world.
The whole team of IndoUS rare is very compassionate and committed towards their goal.
"Your vision is transformative."
Keep up the good work!!!

My journey with IndoUSrare began as an intern, where I was introduced to the world of rare disease advocacy and research. What started as an opportunity to learn has now evolved into a deeply meaningful experience, as I contribute to projects to bridge research gaps and support rare disease communities. IndoUSrare’s global collaboration and patient empowerment mission has been truly inspiring, and I’m proud to be part of such transformative work.

IndoUSrare is an outstanding initiative dedicated to addressing rare diseases, and I am privileged to be associated with their efforts. Their work focuses on advancing research, advocacy, and collaboration, with a patient-centered approach, through strategic Indo-US partnerships. The mission to support individuals and families affected by rare diseases by fostering international collaborations between stakeholders in India and the United States is inspiring and impactful. What resonates with me most is the team’s genuine passion and humanity, which makes working with them truly meaningful.

It has been great working with Indo US rare on one of their projects. The organisation and all its people are incredibly passionate about making a difference for patients with rare diseases and they work very hard to achieve this. It has been an inspiring and educative journey for me, so far. It has been great working with Harsha, Nisha, Saundarya, Ramya and the student volunteers.

I volunteered for the Summit last year and gained experience and knowledge. I was able to pass on the information to family, friends, and people within the military community. Despite, the perception of military medicine and service members rare diseases affect many military families.

Volunteering allows me to see the mission and the hearts of each and every person on the team and beyond. Volunteers and interns are able to use skills learned and develop new ones.

Harsha has a lot knowledge to share. Nisha is compassionate and very understanding. Especially, when helping someone who lives in a different time zone across the country, while she was "boots on ground," in DC. Ramya makes sure I don't miss anything and prepares the highlights for each meeting. She went a step further, by reaching to a patient when it was late in India, but early in the morning in the Dallas, Texas. Some times I wonder why are her and Nisha awake, when I get a WhatsApp message. Both are in India but manage to get what I need or anyone needs to know.

When, I became ill. I did not want to say anything. Yet, everyone was supportive and helped me through with their kindness and support. I felt embarrassed about my illness. I did not to be looked at differently. Or, the team think I was using my position for selfish means. I felt ashamed and I considered quitting. That is how bad I felt.

However, i shared information about the organization with other physicians, military and civilian. If I could help in another capacity. The information or knowing that there are others suffering the same plight is encouraging for some. I am usiing skills like data mining and researching to assist and building on others. Gives me a different outlook on my studies. I wanted to stop going to school, as well. This shows you what kind of people I work along side and who lead.

I still feel bad about getting sick. I wasn't able to finish an assignment on time, for indousrare.org. And, school was adjusted. I did not want the disease to define who I am or how I work. I am more than the disease assigned to me. I want to help others because there weren't many people helping or trying to understand, my plight. IndoUSrare is a nice, pleasant environment to be apart of.

Thank you, IndoUSrare.

IndoUSrare is a great non-profit organization for rare diseases.

It has been very exciting to get involved with IndoUSRare. It is a great initiative with an amazing group of individuals. I’ve had the privilege of working with a lot of the folk here, especially the young interns. Watching the younger interns grow has been incredible and shows the group’s involvement in giving back to the community not only through their initiatives but also through focus on training the next generation.

Its been an honor and privilege to serve as the founding board director of Indo US Organization for Rare Diseases. A very caring, committed team of scientists, patient advocates, philanthropists, volunteers, and advisors are helping shape the future of cross border collaborations between US and India. When the largest democracy collaborates with the oldest democracy to accelerate therapies for rare diseases, patients benefit globally.

My Journey with Indo-US Organization for Rare Diseases
When I found out my child had a rare illness called leukodystrophy, I felt scared and lost. I didn't know where to turn for help. Then, I discovered the Indo-US Organization for Rare Diseases. They became a big help for me, especially through a representative named Ramya Tkarur.
Ramya was really understanding and knowledgeable about rare diseases like leukodystrophy. She listened to my worries and gave me useful information. She even connected me with other people who knew about the illness and could offer advice and support.
Through Indo-US Organization, I learned about different treatment options and how to find specialists. Ramya made sure I had all the help I needed, and she's still there for me, checking in regularly and offering assistance.
I'm really grateful for the support has given me. They've made me feel hopeful about my child's future and reminded me that I'm not alone in this journey.

Hi I am from Nepal.

indoUSrare is very helpful organization, which focuses on the rare diseases area. It supports rare disease patients, their family/parrents and creating awareness about Rare Disease etc. which is very appreciable and sacred work.

In my experience, I connected with this organization and talked with Ramya T. Karyr (Project Associate of IndoUsrare).

When I reached with her, she supported me without any boundry and also were be available any time when I requested. Which made me
some relief from my problem.
Thank you very much Ramya T. Karur and IndoUSrare team for your unforgottable and amazing work.

I love your work and will remember you every time when needed.

A well organized group with a goal to collaborate and improve outcomes for children with rare diseases. Harsha and his team have developed many collaborations across the US and India and helped many patients and families.

"Kudos to the IndoUSrare Team!"
Kudos to the IndoUSrare team for their incredible work! The dedication and passion you exhibit in raising awareness about rare diseases are truly commendable. Your efforts are bringing a ray of hope to those who need it the most.

Thank You for Making a Difference!"
IndoUSrare has been doing an exceptional job in spreading awareness about rare diseases. We'd like to congratulate your team for the remarkable efforts you've put into this mission. Your work is changing lives and providing hope to countless individuals and families.

It's been a wonderful experience working with this NGO, and we are immensely grateful to the team. We look forward to continuing our long-term collaboration.

Anuvansha Foundation would like to express our sincere appreciation for the commendable work undertaken by IndoUSRare in serving the Indian rare disease patients. Their work in bridging the gap for this community aligns perfectly with our shared vision of promoting inclusivity in the healthcare system for rare diseases in India.

IndoUsRare's dedication to this cause is truly noteworthy. Their commitment to providing support and resources to those affected by rare diseases is making a positive impact in the lives of many. It is evident that their initiatives are well-planned and executed.

We appreciate the realistic and practical approach taken by IndoUSRare in their mission and look forward to continued collaboration to make inclusivity in rare disease healthcare, a reality in India. Thank you for your dedication and meaningful work.

BharathMD foundation, a parent advocacy support group of Muscular Dystrophy would like to share our experience with Indousrare, our journey has been very encouraging especially their support in
• bridging the gap by connecting patients, foundations
• updating with advancements in rare disease space in India & globally
• Conducting significant surveys.

IndoUSRare has established a strong and compassionate team that is dedicatedly working to shed light on the needs of rare disease patients, breaking the silence surrounding their struggles. They deserve all the recognition and support they can get as they continue to make a meaningful difference in the lives of so many families.

IndoUSRare is a great initiative for rare disease area, it's supporting rare disease patients, creating a lot of awareness about diseases which is great appreciable. We feel IndoUSRare is an organization that is transforming the definition of rare diseases.
Dear 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. We the National Alliance of Sickle Cell Organizations (NASCO) India, glad to become its part and wish them all the best for all future endeavors.

Cure Mito foundation is proud to be a part of Indo-US organization for rare diseases alliance! Indo-US Rare provides a lot of support to the participating organizations and helps amplify our voices and our unique contributions. We hope to continue working together for many more years to come!

INDOUSRARE Team, Its been pleasure to highly recommend your team in approaching and collaborating with the rare disease patient & their family. My son has been diagnosed with one of rare genetic disease and while exploring different forums for information related to it, i did come across with this organisation and registered myself here with same and from there onwards, i got tremendous support and useful information related to this rare disease. One of the team member named Ramya who was continuously in touch with me and following up with all the relevant information needed in correspondence to this rare disease and also helped me to colloborate with one of the best doctors from US to gain some insights into this disease and how to deal with it.
Really Appreciate all the hardwork done by Indousrare team in such a genuine cause and keep the momentum going for such a noble cause.
Thanks again

IndoUSRare is a great initiative for rare disease area. The organization helps build research collaborations across the borders of India and the US. With almost a year of association with the organization, I can see great work being done advocating rare diseases, connecting various stakeholders, and spreading awareness for the cause.

I am akanshi Gupta, patient of muscular dystrophy LGMD2A. I am currently pursuing my PhD in chemical sciences. I am shocked by discrimination facing by people of PWD and rare diseases in India. I have my self been victim of such unfair laws and unprivillged as well as unfair society.There is no benefits in government sector. They are not prefered in PWD category also as compared to other problems. There are many such posts where they are not physically allowed. I want to raise a voise against it and wants equity in jobs , employees for rare diseases. I personally believe that my thoughts can be rasied by INDO US organisation. I want to personally thank Dr Nisha venugopal to motivate me and give me a platform to speak. I will conclude by saying as citizen of country we also have equal rites to job and employment and should not be discriminated on basis of our health. We are already suffering a lot and had done everything to complete our education don't take this opportunity from us on basis of our ill health which is not even in our control.

IndoUSrare does some great work supporting rare disease patients, creating a lot of awareness about diseases that general public are unaware about. They are highly mission driven, having known them over 2 years they are highly committed to the cause.

IndoUSrare is dedicated towards making rare disease treatment more accessible for everyone. The team is highly motivated and passionate about their work. I have worked with them and known them now for more than a year. It has been a learning experience working with such a passionate and dedicated group.

Dr. Shyama Narang Foundation, Bangalore, India, (mndtrust.co.in) set up to exclusively assist people with motor neuron disease and their families, have been closely working with IndoUSrare since the last one year. Any request gets a response immediately say less than 24 hours.

Within a very short period of our association, we recently, 22nd June 2022, collaborated with a premier National Institution in India (NIMHANS) to have a global virtual conference on 'Best practices for patient registries in the Indian context -Special focus on ALS/MND'. Mr. Harsha Rajasimha choreographed this virtual international conference. The best experts on the subject in the India and abroad participated in the deliberations. A white paper with recommendations of the experts made during this conference is underway to the Government of India for setting a road map for the National Registry for MND.

We at Dr. Shyama Narang Foundation, appreciate IndoUSrare’s professional approach to take up the varied challenges that the rare diseases poses and their undaunted spirit to strive to find the cure to many of these diseases with their active collaboration with clinicians, research scientists, government bodies, pharms and NGOs. We wish them all success in making many of these rare diseases revisable and completely curable.

I got started with IndoUSrare because of a shared vision of creating a safer and friendlier environment for all people. There are so many aspects of advocation, for me, I truly enjoy policy making. IndoUSrare rare has been such an enjoyable experience and I'm excited to keep volunteering with them!

Out of interest to educate myself on the plight of rare disease community in India, I got myself connected with IndoUSrare. Currently, I'm interning with IndoUSrare besides being a full time research student in my Uni. As an intern, I lend my hands to help the organisation with their ongoing projects. All I see here is a dedication and commitment by the organisation to improve the status of the RD patients. The team actively gets involved in global RD related meetings, webinars and conferences. With an intention to bring more awareness and ease in availing therapies/support system for RD, the organisation is very much welcoming to new members and their ideas. There is also great support and guidance for the interns which is very much appreciable! If more people were to join hands, together we can bring a change!

I have been working with the organization and they have been compassionate and supportive of the families they are supporting. They go out of their way to find resources and help families with the right diagnosis. I am betting on their vision for reducing the time required for diagnosis in India from 7 years to less than a year.

I look forward to seeing more of their work that is impacting patients and families with genetic disorders.

I am a Genetics scientist in the field of rare disorders. I am also a volunteer for IndoUS rare for the past year. They are doing excellent work in bringing together patients of rare genetic diseases and getting them in touch with experts in the field by organizing webinars, etc.

I can see IndoUSrare for their tireless efforts to fight with the rare disease. I give value to their dedication and I still remember the day of my first interaction with IndoUSrare with an idea of new formulation of some orphan drug. Based on the idea they said yes straight ahead and have helped this grant challenge to improvise, looking for industrial partners, and many more supports. IndoUSrare has taken not more than 39 minutes to revert and 24 hours to solve the challenges I have thrown to them. I really appreciate their dedication. It's actually nice working with you all, let us fight with the rare disease.

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.

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.

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.

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.

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.

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.

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!

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!

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.

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!