Tag: LSDSS
Gaucher Awareness Day commemorated in New Delhi
The event was also a platform to bring patients and families together to raise their collective voice to seek treatment from the central government......................
Patient groups hail govt’s move to expedite rare disease policy formation
Union Health Minister, Dr Harsh Vardhan has directed ministry officials to speed up the process of formulating the National Policy for Treatment of Rare Diseases (NPTRD), in consultation with all stakeholders....................
Pompe patients in Kerala awaiting treatment despite judicial intervention
Despite the judicial intervention, the government has not initiated the interim treatment and this has led to the funds being lapsed, leaving the patients in dismay.................
LSDSS writes to PM, appeals for Rs 100 crore fund to...
Letter of appeal submitted to Prime Minister’s Office to immediately implement National Policy for Treatment of Rare Diseases 2017 (NPTRD) and release pledged Rs 100 crore for the treatment of rare diseases...……….
Rare disease patients waiting for an immediate interim support from govt
At an event held in Delhi, the rare disease patients and families raised their collective voice to seek hope for a better treatment from the central government................
Sanofi Genzyme observes Rare Disease Day in India
The company said that it stands committed to the cause of supporting patients with rare and debilitating disorders............
Rare disease day commemorated in Delhi
Lysosomal Storage Disorders Support Society (LSDSS) organized an event to spread awareness regarding rare diseases and its policy...................
Patients appeal govt to ensure free treatment for the rare diseases
Appeal to the government to provide free treatment for patients with Lysosomal Storage Disorders (LSDs)....