In a historic first, the UN General Assembly adopted a resolution for “Addressing the challenges of persons living with a rare disease and their families” at its 76th Session on December 16, 2021. The landmark resolution – which calls UN member states to achieve universal health coverage by 2030 for all including persons living withRead more
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The Ataxia Awareness Society (AAS) – an NGO dedicated to spread awareness about the rare disease, help the sufferers and encourage research in this field – is organising a webinar on Ataxia on 18th December (Saturday) at 7:30 PM IST. Being organised in collaboration with the Indian Organisation for Rare Diseases (IORD) & AAS, theRead more
Living with Isaac Syndrome – known to be having less than 40 recorded cases in India as quoted in this article – came along with baggage of issues for Rare Disease survivor Rachit Shah, throwing his life into a chase for treatment & recovery from the rare disease. Diagnosed in 2016 with Issac Syndrome (alsoRead more
In what can be termed as a promising development for the rare disease community, a pilot study of rare undiagnosed diseases has shown that the Whole Genome Sequencing improves diagnosis by 25%. In this pilot study, the researchers from the University of Exeter, Genomics England and Queen Mary University of London pooled genes of 4,660Read more
It is a herculean task to get insurance cover for rare diseases as they don’t usually exist for such patients. With over 7000-8000 rare diseases, some of which have a costly treatment protocol while many others have no available cure at all, it becomes all the more difficult. Here is a news story that mayRead more
In a first, Indian Organization for Rare Diseases has initiated setting up of a Patient Support Group for Congenital Ichthyosis with all key stakeholders – patients, caregivers & patients’ kin. How does Congenital Ichthyosis impact a patient? It is a rare genetic skin disease; wherein affected patients present with an abnormal skin barrier leading toRead more
Being compassionate to the needs of rare disease patients has been a pet concern for late Dr Nyapati Srinivasa Rao, 61, in his long association with the Indian Organisation for Rare Diseases (IORD) as a managing committee (MC) member. The humble and always gentle doctor had his feet deeply grounded on research in alternative medicineRead more
If you are a Rare Disease patient in need of a disability certificate, you may no longer need to face the hassle of going around offices as the Department of Empowerment of Persons with Disabilities (DEPwD), Government of India, has now made it mandatory for all physically challenged in India to apply for one onlyRead more
The Union Health & Family Welfare Ministry has officially approved the “National Policy for Rare Diseases 2021” on 30th March 2021. This development comes in the wake of the Delhi High court pulling up the union health ministry and setting a deadline of 30th March 2021 to notify the National Health Policy for Rare DiseasesRead more
The Indian Organization for Rare Diseases (IORD) – a not-for-profit umbrella organisation – hosted a webinar on ‘Rare Diseases: Prevention’ with top global speakers on February 2, 2021. The topic assumes significance, as the estimated rare diseases population in India is about 90 million. Irrespective of what definition we use for rare diseases, more thanRead more