For the Cystic Fibrosis Community: Self Isolation is NOT the “New” Normal!

RareiTi and CysticFibrosis.com have come together during the COVID-19 pandemic, to find out directly from CF patients and their caregivers what impact the pandemic is having on them.  We wondered what differences they are feeling and what we all can learn from this vulnerable rare disease community, who are already use to self-isolation and physical…

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Stopping the spread of COVID-19 by self-isolation and quarantine is hard. How will home healthcare help?

Since the early days of the COVID-19 outbreak, the focus has been on minimising the risk to the most vulnerable in society; the elderly, immunosuppressed, patients with co-morbidities, whilst preserving the resources of healthcare systems anticipating increased demand for acute services – flattening the curve.  Self- isolation means vulnerable individuals now find themselves being excluded…

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Putting compassion into compassionate use

Compassion can be defined as “ feeling or showing sympathy and concern for others”  RareiTi is founded on the premise that the best way to enable patients to access the medicines that they need, at the earliest opportunity, is to develop our programs from empathy and patient experience, rather than through the prism of the…

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Questions Around Lottery Access Strategy

“It’s a lottery where we’re leaving children’s lives up to chance. I don’t think it’s a game that any of us want to play.” This is a parent’s response to the news that Novartis has started to receive applications for a lottery-based program to give away 100 doses of its $2.1m gene therapy treatment Zolgensma for the debilitating spinal muscular atrophy (SMA) in countries where it is currently unlicensed.

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