Nurses seek donations for rare diseases program amid funding confusion | marywardy
Nurses are working on a volunteer basis and fundraising to keep a program running for patients diagnosed with rare diseases after the federal government failed to fulfil an apparent election promise to renew its funding last month., including Crohn’s & Colitis Australia and the Mito Foundation, on the basis that people with a new diagnosis often first seek help from a non-profit organisation.
In March, then shadow health minister Mark Butler said Labor would fund the expanded program and provide $2.47 million over a further three years when the initial funding ran out in June, without the condition of a further evaluation. He described the program as a “relatively modest” investment, delivering “really strong outcomes”.
“Running a health service is a complex undertaking and we had worked really hard to make sure we were ready for implementation on July 1,” she said.A spokesperson for Butler’s office said it still intended to provide the $2.47 million – through the October budget. Holliday said the expansion was going ahead regardless and nurses joining the program had agreed to volunteer their time as the CCDR seeks donations from the public.“The nurses have been amazing; they just want to help. We’ve asked people to put their hand up and they have,” she said.
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