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Long-term caregiving

We are so pleased to bring you this special edition on long-term caregiving. For the majority of people with a rare disease some form of caregiving is required, usually for life. Long-term caregivers are generally unpaid, unprepared and untrained. Yet it is a role they take on with selfless dedication. It is clear that more needs to be done to care for our caregivers to ease the burdens: emotional, physical and financial. As we celebrate carers week here in the UK, it is the perfect time to recognise these unsung heroes and show just how much they are valued, appreciated and not alone in their RARE journey.

We would like to thank Alexion, who have partnered with us on this very special project. We would also like to thank all the contributors who so generously gave their time and insight to raise the profile of rare disease and share their RARE journey.

For the majority of people with a rare disease some form of caregiving is required, usually for life. Long-term caregivers are generally unpaid, unprepared and untrained. Yet it is a role they take on with selfless dedication

We are so pleased to bring you this special edition on long-term caregiving. For the majority of people with a rare disease some form of caregiving is required, usually for life. Long-term caregivers are generally unpaid, unprepared and untrained. Yet it is a role they take on with selfless dedication. It is clear that more needs to be done to care for our caregivers to ease the burdens: emotional, physical and financial. As we celebrate carers week here in the UK, it is the perfect time to recognise these unsung heroes and show just how much they are valued, appreciated and not alone in their RARE journey.

We would like to thank Alexion, who have partnered with us on this very special project. We would also like to thank all the contributors who so generously gave their time and insight to raise the profile of rare disease and share their RARE journey.

We are so pleased to bring you this special edition on long-term caregiving. For the majority of people with a rare disease some form of caregiving is required, usually for life. Long-term caregivers are generally unpaid, unprepared and untrained. Yet it is a role they take on with selfless dedication. It is clear that more needs to be done to care for our caregivers to ease the burdens: emotional, physical and financial. As we celebrate carers week here in the UK, it is the perfect time to recognise these unsung heroes and show just how much they are valued, appreciated and not alone in their RARE journey.

We would like to thank Alexion, who have partnered with us on this very special project. We would also like to thank all the contributors who so generously gave their time and insight to raise the profile of rare disease and share their RARE journey.

We are so pleased to bring you this special edition on long-term caregiving. For the majority of people with a rare disease some form of caregiving is required, usually for life. Long-term caregivers are generally unpaid, unprepared and untrained. Yet it is a role they take on with selfless dedication. It is clear that more needs to be done to care for our caregivers to ease the burdens: emotional, physical and financial. As we celebrate carers week here in the UK, it is the perfect time to recognise these unsung heroes and show just how much they are valued, appreciated and not alone in their RARE journey.

We would like to thank Alexion, who have partnered with us on this very special project. We would also like to thank all the contributors who so generously gave their time and insight to raise the profile of rare disease and share their RARE journey.

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