September 24th every year is observed as aHUS Awareness Day. The day was picked because it was around that time that the term "Hemolytic Uremic Syndrome" was first used by Prof Conrad van Gasser in medical literature. The day was decided by the Atypical HUS Alliance, an umbrella group of aHUS patient support groups from various nations.
This year has been special for aHUS patients in India. After years of hopelessness, we finally have a drug that is approved for sale in India and has been launched in India. Until a year or so back, we would never have imagined this would become a reality. Full credit and much gratitude to AstraZeneca for bringing the drug to India! The aHUS India Foundation has witnessed the team work really hard to make this a reality.
The Government of India also deserves a lot of credit for coming out with a National Policy for Rare Diseases. This is truly a sign of tremendous foresight and consideration for rare disease patients. The aHUS India Foundation commends the Government of India for this step on behalf of all aHUS patients.
We are excited that the times are changing for aHUS patients in India. We hope that drug access will be improved further and challenges in pricing will be overcome. We cannot rest until every aHUS patient in the country has access to a drug that they are able to afford and not have to continue to live a compromised life due to this disease.
Here is a message from the aHUS India Foundation on this occasion:
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