Other RD News
On behalf of the Priority Setting Partnership Steering Group, we would like to share a survey questionnaire to set research priorities for liver GSD. Responding will take you max 5 minutes. We ask only GSD patient (caregivers) and health care providers to answer. https://www.surveymonkey.com/r/IGSDPSP-English This initiative was presented during the IGSD2017 conference in Groningen. The goal is […]
Charitable Access Program application link for 2017 is now activated. The link for the actual application is https://app.wizehive.com/apps/login/shire2017 Click here to download the application instructions. The application deadline is September 3, 2017.
Calling for better health research in India, health experts, including those from the All India of Institute of Medical Sciences (AIIMS), on Wednesday said that innovations in medicine alone can help cure rare diseases. Considering India’s population, doctors said that the number of patients suffering from rare diseases was quite significant now. The diseases are […]
My wife Merlyn Joseph was a positive person. She would never sit and grieve when faced with trouble. She knew how to laugh when in pain. After she was diagnosed with Aplastic Anemia, we were initially shattered. It took us a while to even understand and accept what was going on. It was Merlyn’s strength […]
CHENNAI: Tamil Nadu will soon screen its new-borns to find out children with inborn errors of metabolism, the first-of-its-kind effort in the State. The programme sponsored by the Union Health Minister will be implemented on a pilot basis at Vellore, which was chosen as one of the priority areas, officials told Express. At present, there […]
JAIPUR: A policy proposal for diagnosis and appropriate treatment of rare diseases was submitted in 2015, but it is yet to see the light of day owing to the apathy of the state government. Rare disease is a segment of diseases which is still not in the priority list of the government. These diseases are […]
Experts have welcomed the government’s decision to approve the National Policy for the Treatment of Rare Diseases, the draft of which was submitted by the Union Ministry of Health to the Delhi High Court on 25 May. However, they feel that the expensive and prohibitive nature of the treatment with no insurance coverage, untimely diagnosis, […]