Tag Archives: survey

Making our voices heard

We know that if something isn’t counted, it doesn’t count… And we all want to use our experiences and our knowledge to make positive change happen in our health and social care system.  So we are working to make sure … Continue reading

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Palliative Care: The Lets Talk About Survey

The All Ireland Institute of Hospice and Palliative Care’s “Let’s Talk About” care survey is gathering experiences, good and bad, about palliative care in the Republic of Ireland and Northern Ireland. Many people with rare diseases live with a serious … Continue reading

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SURVEY DEADLINE EXTENDED

Good News!  Our original end March deadline for responses to the “Living Every Day with Rare Disease” Survey has been extended: so we now have some more time to get our voice heard. If you haven’t done so already, go … Continue reading

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“Stronger Together” in action

In Northern Ireland it is estimated that more than 100,000 people will be affected by a rare disease- that’s approx. the size of a city like Derry~ Londonderry. Each condition lacks a critical mass, but collectively, rare diseases are not … Continue reading

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Living with chronic pain?

Do you suffer from Long-Term (Chronic) Pain? The Patient and Client Council is an independent voice for people in Health and Social Care.  They want to find out about people’s experience of the treatment and care they have received for … Continue reading

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