Race for 7: NGO host run to raise awareness on rare diseases

To commemorate Rare Disease Day which is being observed on February 28, an enthusiastic 1500+ participants, including rare disease patients and their caregivers, took part in RaceFor7 at Bandra Kurla Complex in Mumbai and were joined by another 3500+ participants from Bangalore. Race for 7 is an awareness walk/run organised by the Organization for Rare Diseases (ORDI)

Race for 7: NGO host run to raise awareness on rare diseasesORDI is an NGO committed to address the challenges faced by suffering from rare diseases and its treatment. The objective of the Race for 7 is to raise awareness for the 7,000 documented rare diseases and the estimated 70 million patients in India suffering from a rare disease. Race for 7 was first held in […]

Mysterious case of Italian woman who sweats blood baffles doctors

The condition known as hematohidrosis is a rare disease characterised by blood oozing from intact skin or mucous membranes, such as from inside the nose. Symptoms can include sweating blood, crying bloody tears, bleeding from the nose, or bleeding from other skin surfaces, according to the National Institutes of Health's Genetic and Rare Diseases Information Center. There is no known cure for hematohidrosis

Mysterious case of Italian woman who sweats blood baffles doctorsA young woman in Italy has a rare and mysterious condition that causes her to sweat blood, according to a new report of her case. The 21-year-old told her doctors that, over the last three years, she periodically experienced bleeding from her face and palms, without any cuts or skin lesions. These bleeding episodes typically […]

Doctors welcome national policy for treatment of rare diseases

Under the policy, a corpus fund of Rs 100 crore at central level would be set up towards funding treatment of rare genetic disease. It also proposes similar corpus fund at state level

Doctors welcome national policy for treatment of rare diseasesThe Ministry of Health and Family Welfare has formulated a national policy for treatment of rare diseases in India to progressively build India’s capacity to respond comprehensively to rare diseases. The medical fraternity in Pune has welcomed this initiative saying that it is encouraging for the medical fraternity and it will be lend a helping […]

ICMR launches registry of rare diseases

Launched on April 27 by the Indian Council of Medical Research (ICMR), the registry is important for determining the precise number of patients, age of onset of symptoms, age of diagnosis (to determine the delay for making the diagnosis), course of disease / natural history of disease

ICMR launches registry of rare diseasesRecognising the importance of data to treat people with rare diseases, the Indian Council of Medical Research (ICMR) has launched The Indian Rare Disease Registry on April 27 during the National Initiative for Rare Diseases (NIRD). ICMR launched this registry in collaboration with All India Institute of Medical Sciences (AIIMS), Jawaharlal Nehru University (JNU), and […]