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Rare disease consultation plan launched at Stormont by Health Minister Jim Wells

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Health Minister Jim Wells and Christine Collins, chair of the NI Rare Disease Partnership. Pic Declan Roughan

Health Minister Jim Wells and Christine Collins, chair of the NI Rare Disease Partnership. Pic Declan Roughan

Health Minister Jim Wells and Christine Collins, chair of the NI Rare Disease Partnership. Pic Declan Roughan

Health Minister Jim Wells and Christine Collins, chair of the NI Rare Disease Partnership. Pic Declan Roughan

Health Minister Jim Wells and Christine Collins, chair of the NI Rare Disease Partnership. Pic Declan Roughan

Health Minister Jim Wells and Christine Collins, chair of the NI Rare Disease Partnership. Pic Declan Roughan

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Health Minister Jim Wells and Christine Collins, chair of the NI Rare Disease Partnership. Pic Declan Roughan

A consultation plan has been launched into rare disease in Northern Ireland.

The draft plan - which sets out a six-year framework - was launched at Stormont by the Northern Ireland Rare Disease Partnership (NIRDP) and Health Minister Jim Wells.

Around 100,000 people in Northern Ireland are impacted by rare diseases, according to the organisation.

Launching the plan, Jim Wells revealed during his own personal connection - speaking of his shock after a family member was diagnosed with a rare degenerative eye disease.

Mr Wells said "everyone has a right to expect the best treatment and care that the Health Service can provide".

"The UK Rare Diseases Strategy aims to ensure that patients with a rare disease are not disadvantaged," he said.

"We all want to see improved outcomes for those living with a rare disease, whether they are a patient, family member, carer or member of the broader support community for rare disease patients.

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"I see this rare disease implementation plan as the next stage of our journey to improve rare disease services in Northern Ireland and I would urge all stakeholders to respond to the consultation, so that my department can be assured that the proposed implementation plan meets the needs of those living with a rare disease."

Christine Collins, chair of the NIRDP said: "We welcome the publication of the draft implementation plan and the minister's decision to undertake a  consultation process.

"We in the NIRDP have undergone a process of growth and development and we will continue to grow and develop. It is crucial that we do so, because without an organisation to bring together and focus the efforts of all those living and working with rare disease Northern Ireland, families and people affected by rare diseases here will be left vulnerable, isolated and disempowered. "

For more information click here.


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