Media

Racefor7 – Raising awareness and de-stigmatizing rare diseases in India

Click below Link Racefor7 – Raising awareness and de-stigmatizing rare diseases in...

A virtual event in namma Bengaluru to raise awareness and destigmatise rare diseases in India

Click below link: https://timesofindia.indiatimes.com/entertainment/events/bangalore/a-virtual-event-in-namma-bengaluru-to-raise-awareness-and-destigmatise-rare-diseases-in-india/articleshow/81193039.cms A virtual event in namma Bengaluru to raise awareness and destigmatise rare diseases in India In the backdrop of Rare Disease Day 2021, Organisation for Rare Diseases India (ORDI) a...

Pompe News

...

Lab notes: Marriages within castes may have harmed the health of many communities in India

Endogamous marriages over generations has led to genetic isolation leaving many groups vulnerable, a new study finds. The occurrence of genetic diseases in certain subpopulations in India and other countries...

South Region Virtual Rare Disease Consultation on 18th February 2021 – Joining Link

Hello All, State government of Karnataka is organising a South Region Virtual Rare Disease Consultation in collaboration with PPHF. The objective of the virtual consultation is to address the key unmet...

Watch NewX A-List Interview of Mr. Prasanna Shirol; the story of ORDI that begins from going Pillar to Post for his daughter’s undiagnosed Rare Condition until he chooses the path to Rare Advocacy.

https://youtu.be/KnZiSIhQGlE ...

Treatment for rare diseases- an ethical imperative

February 17, 2021 2:53 PM World Rare Disease Day – 28th Feb: COVID-19 pandemic exposed the world to ethical imperatives of equitable access to health products. Rare diseases...

No parent should repent a child born with a rare disease’: Prasanna Shirol, Co-Founder & Executive director, ORDI

Prasanna Shirol, Co-founder and Executive director of Organisation for Rare Disease in India (ORDI) recently joined NewsX for a conversation under its special segment, News X India A-List series. Mr...

Watch the NewsX A-List Interview of Mr. Prasanna Shirol; the story of ORDI that begins from going Pillar to Post for his daughter’s undiagnosed Rare Condition until he chooses the path to Rare Advocacy.

...

The Burden of Rare Diseases

Over 70 million Indians suffer from rare diseases, the treatment cost of which runs into tens of lakhs every year, lifelong. Yet we don’t have a national policy to support...

Racefor7 – Raising awareness and de-stigmatizing rare diseases in India

A virtual event in namma Bengaluru to raise awareness and destigmatise rare diseases in India

Pompe News

Lab notes: Marriages within castes may have harmed the health of many communities in India

South Region Virtual Rare Disease Consultation on 18th February 2021 – Joining Link

Watch NewX A-List Interview of Mr. Prasanna Shirol; the story of ORDI that begins from going Pillar to Post for his daughter’s undiagnosed Rare Condition until he chooses the path to Rare Advocacy.

Treatment for rare diseases- an ethical imperative

No parent should repent a child born with a rare disease’: Prasanna Shirol, Co-Founder & Executive director, ORDI

Watch the NewsX A-List Interview of Mr. Prasanna Shirol; the story of ORDI that begins from going Pillar to Post for his daughter’s undiagnosed Rare Condition until he chooses the path to Rare Advocacy.

The Burden of Rare Diseases

Donate

Volunteer Now