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"Working together we can secure the best use of scarce expertise and resources, maximising the health gain for all those with rare conditions" Alastair Kent OBE, Chair of RDUK

 

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Rare Disease Day 2014

Rare Disease Day provides the rare disease community across the world with the opportunity to increase awareness of rare diseases and highlight this public health priority to government and health departments. It is recognised in countries all around the world and this year was held on 28th February (in a leap year it is held on the 29th February, a rare day).

Rare Disease Day 2014 focused on care and encourages everyone in the rare disease community to Join Together for Better Care. Caring for people living with a rare disease has many facets. Some patients have access to medicines while others have no treatment available. Some patients are independent while others require intensive physical assistance and equipment. Care can consist of specialist equipment, expert medical consultation, physical therapy, social services, medicines, respite for family members, and much more. For most children and adults living with a rare disease, primary care is provided by family members.

To mark Rare Disease Day, Rare Disease UK (RDUK) held events across the UK. The first event was held in the Welsh Assembly, hosted by Rebecca Evans AM. The event focused on the importance of the UK Rare Disease Strategy, which was published in November 2013, and its future implementation in Wales.

 

 From left: Alastair Kent OBE, Chair of RDUK, with our speakers Marie Jones, trustee of the Tuberous Sclerosis Association and Dr Chris Jones, the Deputy Chief Medical Officer for Wales.   

Dr Chris Jones, Deputy Chief Medical Officer for Wales, informed attendees of the plans for implementation of the UK Strategy in Wales; these include looking at co-ordinating care in an integrated way and balancing the distribution of services across Wales. He also stressed that the Welsh plan would be a living document that would continually evolve to best improve the situation for patients, families and clinicians.

Our next speaker Marie Jones gave a moving account on her son’s experiences of living with Tuberous Sclerosis Complex and welcomed the improvements that the implementation plan could bring for her family.

The event was a huge success and it was great to see so many people attend to mark Rare Disease Day in Wales.

Our second parliamentary reception took place in the Scottish Parliament and was hosted by Bob Doris MSP, who noted that 300,000 people in Scotland are affected by a rare disease at some point in their lives.

Alex Neil MSP, Cabinet Secretary for Health and Wellbeing spoke at the reception on how the Scottish Government intends to implement the UK Strategy for Rare Diseases in Scotland. He noted that the Scottish Government would improve the speed and accuracy of diagnosis and embrace advances in research and care in rare diseases.

From right: Our host Bob Doris MSP, with Joan Fletcher, Marion and Thomas Ferguson, Alex Neil MSP, Alastair Kent, Dan Farthing and Susan Warren.

In England, our reception was hosted by Liz Kendall MP in the House of Commons. Around 140 people attended the event to mark Rare Disease Day.

Liz Kendall MP blogged about the event and you can read it here.

Speakers also included Earl Howe, the Parliamentary Under Secretary of State for Quality, who holds the rare disease brief.

Earl Howe announced that Deputy Chief Medical Officer for England, David Walker, would be the new National Lead for Rare Disease in England.

James Palmer, Clinical Director, Specialised Services at NHS England launched NHS England's Statement of Intent which outlines how NHS England will implement the healthcare commitments in the UK Strategy for Rare Diseases. You can read the Statement of Intent on the NHS England website.

A list of the organisations responsible for taking forward the commitments can be found here.

Our final speaker Dr Beverly Searle, CEO of Unique, gave an interesting account of her intertwined personal and professional experiences, as both a mother of a child with a rare chromosome disorder and as a post-doctoral researcher in genetics.

We had great feedback from the event and this year our presence on social media has gone from strength to strength. To keep up to date with RDUK’s work, you can follow us on Twitter @rarediseaseuk or ‘like’ us on Facebook at www.facebook.com/rarediseaseuk.

In Northern Ireland, we worked with the Northern Ireland Rare Disease Partnership to hold an all Ireland conference in Belfast. Both Health Ministers were in attendance and over 200 people attended the Joint North South event.

Alex White announces the Republic of Ireland's own Rare Disease Plan at our all Ireland conference in Belfast.

At the Conference, Edwin Poots, Minister for Health, outlined Northern Ireland’s response to the UK Strategy for Rare Diseases.

Alex White, Minister for Health in the Republic of Ireland, provided attendees with an update on progress towards finalising the Republic’s own Rare Disease Plan. You can read his speech here

Attendees took part in panel discussions which focused on the key steps needed to improve care and quality of life for those living with rare conditions; and to show how “Joining Together for Better care” makes a real difference to the lives of parents, children, and all those affected by rare diseases.

If you want to know more about what is happening in your nation, you can visit the rare disease page on the Department of Health website here.

For more information about any of the above, please contact Farhana Ali, Executive Officer - or 020 7704 3141.