Ontario Rare Action Group is working to unite the Rare Disease Community in an effort to put faces to the diseases that impact to 1.3 million Ontarian's. Ontario needs to establish a Rare Disease Strategy to ensure that the gaps left by current policies are filled so rare patients and their families are able to receive the specialized care they require. Ruchi shared her story with Ontario Rare as well as her MPP to highlight the gaps and the needs of herself and the rest of the Rare Community. Read Ruchis' story below...
In 2001, Ruchi was diagnosed with Stage 1 IgA Nephropathy. At the time, her kidney function was still strong, with a GFR of 105 — but the warning signs had been present for years. She had experienced protein in her urine, high blood pressure, and recurring strep throat, yet these symptoms were often dismissed.
For over two decades, Ruchi navigated this rare kidney disease largely on her own. It wasn’t until 2023 that she finally connected with a community through the IgA Nephropathy Foundation — and everything changed.
Today, there is still no cure. While there are five FDA-approved treatments in the U.S., none are yet approved in Canada, leaving patients like Ruchi facing uncertainty and limited options.
But Ruchi chose to turn her journey into purpose.
In 2024, she became the Lead Canadian Ambassador for the IgA Nephropathy Foundation. Since then, she has been a powerful voice for change — sharing her story, speaking on pharmaceutical patient panels, hosting awareness events, and even meeting with elected officials to push for better access to care. She is also a member of the Canadian Society of Nephrology Advocacy Committee.
Beyond advocacy, Ruchi is a dedicated pediatric Speech-Language Pathologist supporting autistic children and their families, a proud mom of two boys, and a dog mom to two beagles.
Today, her kidney function is at 21.
She is currently searching for a living kidney donor.
Ruchi’s story is one of resilience, advocacy, and hope — but it’s also a reminder that more awareness, support, and action are urgently needed.
May 14 is IgA Nephropathy Awareness Day.
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