What is the status of rare disease ( such as ALS) advocacy in your country?

[Dagmar Munn]

We have quite a few international members in this forum, so naturally this recent news article caught my attention:

“Nonprofit Works to Raise Rare Disease Awareness in India, Connect with U.S. Groups”

The article describes the newly established Organization for Rare Diseases India (ORDI); a national umbrella organization representing the collective voice of over 70 million people with rare diseases in India. Their mission is to build collaborative bridges between the U.S. and India, and to connect them with patient advocacy groups, with research or clinical trials in the U.S., and with international consortia.

I would be interested in the thoughts and opinions from our forum members who reside in India. Are you aware of this organization? And does the article represent how rare diseases (ALS in particular) are being addressed?

For anyone residing in countries outside of the U.S., does your country recognize rare diseases? Are there advocacy organizations that help connect patients to treatment, clinical trials or support services?

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