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RARE Holistic Care

Holistic care in rare disease

We are delighted to launch our Autumn 2023 edition of RARE Revolution Magazine. Holistic care in rare disease. In a world where the notion of personalised medicine has become the holy grail, it is paramount that we don’t lose sight of the whole picture. The necessity to treat the whole of the patient and not just the physical symptoms. We need to strive to make holistic care the new norm. Not just the latest buzzword, but a true gold standard for all healthcare.

With thanks to our edition supporters, Alnylam, we are lifting the lid on the stark reality of what failure looks like, and sharing the leaders in the pack who are showing the way ahead in spirit, intent and deed.

In a world where religion can often be viewed as divisive and there is a general trend of diminishing congregations in our places of worship, it is easy to think that there is no place for spirituality in modern medicine. But in many ways the opposite is true…For a great many people globally, their faith, whether that be religious or spiritual, is an anchor in times of great stress or uncertainty and can be pivotal in how they manage the challenges of poor health. Retired minister and hospice chaplain Becky Sansbury has given her professional career to the pursuit of providing personalised and timely pastoral and spiritual care to those facing the challenges of degenerative and terminal conditions. Her work in this field makes her our RARE Inspiration.

Traditionally we think of nursing as a care service being delivered in our local communities. Typically when building a nursing network, the approach would be to start at a local level, then expand nationally and, potentially, globally. But as senior nurse Sue Baker explains, this is not the case when it comes to rare disease nursing.

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