Longforms

Lack of access to therapies leaves Canada’s PAH community holding its collective breath

Multiple pulmonary arterial hypertension (PAH) therapies are available to patients in other countries — so why are Canadians waiting longer to receive access to them?

Longforms

The dawn of a new era for Canadians living with cholangiocarcinoma

Medical advancements and a new grassroots patient community are helping to rewrite the stories of Canadians impacted by rare and aggressive biliary tract cancers, like Jennifer Nielsen.

Longforms

Canadian glioblastoma community locked in race against time to make innovative therapies accessible to more patients, sooner

Researchers have made up considerable ground on this deadly brain cancer, allowing newly-diagnosed patients to potentially live longer. Will Canada seize the opportunity to bring the fruits of their labour within reach for patients across the country?

Longforms

“Why not me?”: Many SMA patients left without access to disease-modifying medicines due to age, geography

New therapies have been shown to potentially slow the progression of spinal muscular atrophy (SMA) — so why are many adult patients unable to access them?

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Remembering Bob Acton: Stories about love, loss, and creating a lasting legacy

In 2016, Bob Acton lost his short, courageous battle against amyotrophic lateral sclerosis, or ALS. Now, eight years later, those closest to him continue to grapple with the immeasurable void created by his passing.

Longforms

Stories from the frontlines of the fight for access to innovative therapies

Disease-altering medicines are being developed at an astounding rate – so why can’t Canadian rare disease patients secure timely access to them?

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Finding courage and calm in the face of cancer’s uncertainty

A rare lymphoma diagnosis quickly upends the lives of patients and their loved ones. For Sandra Derouard, time spent with family and friends is an important remedy.

Longforms

Now is the time to address the unmet needs of Canada’s sickle cell disease community

Fuelled by decades of discrimination and stigma, patients like Storma McDonald have banded together to call for significant improvements to the existing standard of care. Thanks in part to the support of clinicians like Dr. Smita Pakhale, tangible change is within reach.

Longforms

Navigating the long and winding road to a rare disease diagnosis

Approximately 1 in 12 — or 3,000,000 — Canadians live with some form of rare condition. Although their experiences are each vastly different and incredibly unique, one thing unites most – the mentally, physically, and financially taxing journey to secure a correct diagnosis.