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Mohua

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Review for Indo-US Organization for Rare Diseases, Herndon, VA, USA

Rating: 5 stars  

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.

Role:  Professional with expertise in this field