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Rare disease screening camp

ORDI was part of Mega Health Check Up Camp organized by Mr Atin Ghosh Member West Bengal Legislative Assembly. This was a free of cost mega Health Check up camp exclusively for children aged 6months to 10 years. ORDI was invited to set up the Rare Disease part of this camp and Dr Dipanjana Dutta, our State Coordinator for West Bengal successfully participated in the camp. She was supported by:

1) Ms. Mansi Sanghvi Bhayani -Psychologist and Special Educator ,

2) Mrs Nivediate Basu Chowdhury- Psychologist and Teacher

3) Ms Upasan Mukarjee, Genetic Counselor

4)Ms. Yashodhara Bhattacharya-Genetic Counselor,

5) Ms. Shanoli Ghosh, Genetic Counselor.

ORDI team screened over 200 individuals. We got 7 Rare Disease patients and 25 High Risk families.

Thanks to all the Mr Atin Ghosh Member West Bengal Legislative Assembly and to Priyadarshini Gosh Bawa, State Secretory, Trinamool Youth Congress for co ordinating this.

Special thanks to Mrs Shikha Metharamani – President Indian Prader Willi Syndrome Association.

Over 200 individuals were screened – 7 Rare disease patients & 25 high risk families were identified Kudos to Dr Dipanjana and the team of volunteers.

Upcoming Events

Our Executive Director Mr. Prasanna Shirol was a part of First Ever summit dedicated to advancing equitable care for rare diseases in older adults. The meeting was attended from 25 countries across Canada, Latin America, Europe, and Asia, representing patient and caregiver communities, patient advocates, healthcare professionals, and healthcare policy experts. This is a short video highlighting the impact of the initiative to date, in the words of the COLLABORATE Community.

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