Maulik Modi

Maulik is a patient advocate representative and currently serves as the Accord Alliance Board Member. Maulik was a spouse of a person with DSD which he found out during the marriage. Having no prior knowledge or education on the subject left him with a unique experience of dealing with concealed care.

As a spouse caregiver of DSD, Maulik’s experience is that secrecy and stigma are the real culprits which can only be overcome with education and awareness. It is this passion for the needs of patients, spouses, children, family and taking a hollistic approach to DSD care which drives Maulik to get the right answers. Maulik stumbled into the issues surrounding DSD families and as the cloak of concealment unraveled, Maulik unearthed that the issues of secrecy and stigma of DSD individuals are passed on to children of DSD families as well. It’s a different kind of inheritance – neither financial nor genetic but an inheritance of inequity for innocent children born into DSD families. Issues like childhood statelessness, legal identity, access to health, education and several welfare resources are threatened for innocent infants simply for being born into DSD families as if its an “untouchability” issue. 

Maulik is an Indian American and as a multi-cultural individual experienced how different cultures deal with the same issues differently impacting DSD families and children. Maulik is an advocate from the perspective of bettering the Quality of Life of DSD families including DSD patients, spouses and children and we need to look at these issues hollistically with inclusivity and mutual respect. Maulik is a published author in peer reviewed academic journals and publications speaking out on issues of LGBTQIA+, surrogacy born children, infertility, childhood statelessness. In his day job, Maulik is in the Information Technology industry helping customers with critical Business Solutions and is an inquisitive scientist by education. 

Maulik loves children and outdoor activities like hiking, running and snow sports. Maulik holds a Bachelors in Chemical Engineering from University of Texas – Austin and a Masters from University of Houston.

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