To mark Rare Disease Day (29 February), local health partners have joined Hackney Council in pledging support to improve outcomes for people living with rare diseases in Hackney, including those living with less common cancers.

The Council was the first local authority to pass a motion in 2018, pledging to raise awareness and understanding of rare and less common cancers because of the inequalities people face in diagnosis, treatments and outcomes. 

Since the motion was passed, the Council has worked with City and Hackney Clinical Commissioning Group, (CCG), to provide training and information for health professionals and partners into rare and less common cancers. 

To ensure that the message is far reaching, the Council has created a toolkit to share with other councils, calling on them to join Hackney in passing a motion, as well as encouraging them to work with their local cancer charities and health networks to support health professionals, patients and their families. Councillors have also written to the Secretary of State for Health and Social Care advocating for government action.

 

On Rare Disease Day 2020, the City and Hackney CCG supports the Council in helping to make the journeys of people with cancer easier, ensuring people suffering with these diseases are not forgotten. 

The Council and the City and Hackney CCG have also been working closely with the Neuroendocrine Cancer UK, (NCUK formerly NET Patient Foundation), a national charity providing support and information to patients and their families.

For more information on Neuroendocrine Cancer contact: Neuroendocrine Cancer UK on 0800 434 6476 or email : hello@nc-uk.org find out more: www.neuroendocrinecancer.org.uk www.neuroendocrinecancer.org.uk 

Other rare and uncommon cancers : www.Cancer52.org.uk 

Rare and uncommon diseases: https://www.rarediseaseday.org/

Notes to editor

The motion was passed by Full Council in Hackney on 31 October 2018:

The motion commits the Council to:

  • Join the international Neuroendocrine Cancer community on 10 November each year, raising awareness of Neuroendocrine Cancers among decision makers, health professionals and the general public;

  • Launch a campaign with Hackney GPs and the NHS Trust to work toward improving an understanding of this disease among medical professionals, contributing to reduce delays in diagnosis

  • Work toward ensuring that the inclusion of rare and less commons cancers in the Cancer Strategy for England is reflected in Hackney’s public health strategy

  • Work alongside councils across London to explore the mechanisms for a London-wide strategy to increase awareness of Neuroendocrine Cancer and other less common cancers

  • Recognise living with cancer is a long term condition and work with our partners to ensure that no one has to face cancer alone

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