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Patient Advocacy Group meet Along with ORDI and GLOBAL GENES.
ORDI, an umbrella organization for Rare disease, India in collaboration with Global Genes had organized a meet in Delhi in which all the Patient Advocacy group from all over India participated to put forth the challenges faced by them and also to plan an action to work together to persuade the Government of India to frame rare disease policy to initiate diagnosis, treatment and research for all the rare disorders.
We have even initiated the process for this and we are trying to persuade the government as a large community and a big voice which needs immediate attention.
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