Connie Johnson, the founder of the Love Your Sister cancer charity, has died.

Her brother Samuel Johnson confirmed that Connie died on Friday evening in a Canberra hospice on the charity's Facebook page.

Connie was diagnosed with terminal cancer seven years ago.

"She went so richly and with such grace. Trust me, she was genuinely cushioned by your love, till the end," her brother wrote.

"It was so beautiful. We laughed, we cried, we sang stupid songs from our childhood to her, which she loved (mostly!). I read her so many village messages, which she relished."

At the age of 11 Connie was diagnosed with a bone tumour in her leg and a decade later cancer was found in her womb.

She went on to forge a legacy with her actor brother — raising millions of dollars for cancer research.

She leaves behind a husband, two sons and a community of people who are determined to eradicate the disease.

On the day she died Sam again asked all women to check their breasts, saying: "If they can check them on the night that she dies, she'll be very happy".

Connie died just hours after being awarded a Medal of the Order of Australia by the Governor-General.

Sorry, this video has expired Samuel Johnson talks about his sister Connie receiving an Order of Australia

Sam described the honour his sister received as "a perfect rainbow in a dark storm".

Sam asked that people leave thoughts and memories of Connie on a tribute page titled Love for Connie.

In his own small tribute on the charity's Facebook page, he wrote:

"Thanks for everything, Connie Cottonsocks. It was my pleasure to be your Sammy Seal."

Connie Johnson and her brother Samuel were inseparable until the very end. ( Instagram: Love Your Sister )

In June, Sam posted a photo of himself and his sister to Instagram, writing that "rainbows carry hefty pricetags" and congratulating her for living "a life to be proud of".

"I'm proud to walk you to the hardest part of the road. The end. The only part of the road in your life that must sadly be travelled alone," he wrote.

"Stand tall through that savage march, stand big and tall, dear sister, for you have lived a life to be proud of. You've loved well, and you've been loved well, which is all that really matters in the end, I suspect."