Rare Disease Day 2014: Join Together for Better Care

Rare Disease Day 2014: Join Together for Better Care

I am pleased to inform you that registration is now open to attend our receptions to mark 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 governments and health departments. It is recognised in countries all around the world and in 2014 Rare Disease Day will be held on 28th February (in a leap year it is held on the 29th February e.g. a rare day).

Rare Disease Day 2014 focuses 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 fairly independent while others require intensive physical assistance and equipment. Care can consist of special 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.

Rare Disease UK will be holding receptions in England, Scotland and Wales to mark Rare Disease Day 2014. We will also work with our colleagues in the NIRDP (Northern Ireland Rare Disease Partnership) to hold an all-Ireland event in Belfast on Rare Disease Day. This year we will be focusing on the importance of implementing the UK Strategy for Rare Diseases which was recently launched on 22nd November. More information on the UK Strategy is available here.

To register, please follow the links below:

Welsh Assembly, Cardiff - Tuesday 11th February 6pm - 8pm

Scottish Parliament, Edinburgh - Tuesday 25th February 6:00pm - 8:00pm

House of Commons, London - Wednesday 26th February 4pm - 6pm

Riddell Hall, Belfast - Friday 28th February 10:30am - 3pm

Your activities to mark Rare Disease Day

We encourage you or your organisation to conduct awareness or fundraising activities of your own to tie in with Rare Disease Day. Things members have done in the past include:

- Organising conferences/events - Conducting awareness days in schools - Producing Rare Disease Day materials/literature - Holding cake/jumble sales etc - Conducting local media activity - Holding special Rare Disease Day promotions in charity shops - Holding stands at hospitals with information about their condition - Holding Rare Disease Day activities in the workplace

If you are planning on holding any activity, please let us know so we can let our members know what’s happening across the country

Other ways to get involved!

Become a friend of Rare Disease Day or share your photos and videos on the official website: www.rarediseaseday.org

Follow Rare Disease Day on Twitter: @rarediseaseday

Join the facebook group: www.facebook.com/rarediseaseday

Members news:

“How to access funding as a small patient group”

Meridian House, London 24th January, 1:30pm – 5:30pm

Findacure is organising a patient workshop early next year, on 24th January, the first in a running series that will cover pertinent issues for small patient groups. This first event will be a half-day event in central London (near Holborn station) focusing on the topic of fundraising as a patient group. There will be a general presentation about different sources of funding, followed by two expert speakers, one from a successful patient group and one from a specific funding source. These speakers will be announced closer to the day. If you would like to attend, please email Flóra at ■■■■■■■■■■■■■■■■■■■■■■ by the 14th December.