Telangana State Health Minister Eatela Rajender Attends World Rare Disease Day 2020 in Hyderabad Source: Eenadu https://www.eenadu.net/latestnews/Etela-Speech-at-public-gardens-hyderabad/1600/120028427Read more
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You are not alone as we all are one! Doctors, Survivors, Expert Speakers, Healthcare Staff, Patients’ Organizations, Rare Disease Patients, Researchers, Policy Makers, Rare Disease Volunteers, Parents and Students enthusiastically participated in IORD’s conference on “Raising The Awareness: Prevention of Rare Diseases” in Hyderabad on 28 February 2020. That’s the takeaway from Indian Organization forRead more
World Rare Disease Day was observed on Friday, here at Hyderabad Millions of people around the world observe Rare Disease Day on the last day of February. “Some rare diseases, such as cystic fibrosis, thalassemia, hemophilia, and Lou Gehrig’s disease ( ALS ), are well known to the public. India has already taken steps toRead more
This has hit the patients who are suffering from rare diseases like thalassemia, sickle cell anaemia, lysosomal storage disorders, Hirschsprung’s disease, Gaucher’s disease, cystic fibrosis, haemangiomas and certain forms of muscular dystrophy. Those suffering from such ailments hit by lack of info. How many cases of rare diseases does India have? No one knows. ThisRead more
Hyderabad: Members of the Indian Organization of Rare Diseases (IORD), an umbrella organisation representing patients and patient groups of rare diseases have sent a proposal to the Centre that a questionnaire should be included in the upcoming census to identify patients. “We have urged the government to identify the patients and once the actual numberRead more
Hyderabad: While the Centre has made attempts to address the problem of rare diseases and even finalised a draft policy for rare diseases, experts say that the draft has completely missed out on covering the aspect of patient knowledge. In such cases, it is often the patient who may have more knowledge about the conditionRead more
Citing space constraints in Census questionnaires and increase in workload of already-overworked enumerators with data related works, the Registrar General of India has turned down the proposal of the Indian Organisation for Rare Diseases (IORD), to incorporate patient data collection in the Census 2021 programme. “By just placing a column on rare disease in theRead more
Rama was born normal. By the time she was six, her life underwent catastrophic events — blindness, breathing problems, asthma, growth problems. These resulted in consultations with multiple doctors and repeated hospitalization. After six years, her condition was given the name Maroteaux-Lamy Syndrome, a genetic disorder that no one had ever heard of and withRead more
Prof. Ramaiah Muthyala delivering a talk on rare diseases in India, in Visakhapatnam on Monday. — PHOTO: C.V. SUBRAHMANYAM This is the era of genetics and not IT anymore, asserted a professor from University of Minnesota of the US who is working in the direction of forming support groups to find drugs for rare diseasesRead more