Christina Raj , connected with Advocate Arvind on LinkedIn onJuly 18, 2023. She called and spoke to him seeking help for the Ichthyosis community to be included in the disability category . The CIRM team met with many officials to seek help for the rare disease patients in India , who had a lot of challenges , physically , mentally, emotionally and Physiologically . Ichthyosis is a rare disease and an orphan disease with no cure .
Severe Ichthyosis patients have multiple underlying conditions that are undetected , because many cannot afford to get the genetic testing done . After a year of constant communication, Advocate Arvind had to learn about the rare skin disease to understand better . He was keen to help us , when he realized the gravity of the situation and also the way many patients suffer without any access to birth certificates, Adhar card , No education , no medical help from any quarter . CIRM Foundation is glad to welcome Advocate Arvind on board as our legal advisor . We appreciate his support.