Rare Disease Day – 28/02/2014 – London Reception – all welcome

Rare Disease Day – A special reception at the Science Museum, London

When: Friday 28th February 2014

Time: 12noon to 2pm

Where: Exhibition Road, South Kensington, London, SW7 2DD

On the occasion of Rare Disease Day, a special reception has been set up in conjunction with a year-long campaign called Challenge the Unchallengeable, which aims to increase understanding in the UK of rare diseases and their impact on patients’ lives.
A sculpture will also be unveiled on the occasion – featuring 2000 raised hands – described as follows:
“Your hand will become part of a powerful, contemporary art installation that will be designed by an aspiring British artist. The installation will bring 2,000 hands together as 1, thus serving as a lasting reminder of our combined efforts against rare diseases.  This piece of art will be prominently unveiled on 28th February (Rare Disease Day) 2014, so you will have the opportunity to go and see your hand in the installation and meet others who have made a difference”.

Website http://www.raiseyourhand.co.uk/news

Patients and families are invited to attend this reception – which MDS UK will attend as well – to mark this special day for MDS as a Rare Disease.
We hope to see some of you there.
If you are planning to attend – PLEASE MAKE SURE YOU RSVP – for catering purposes:

Juliet – PR for Raise Your Hand
Tel 01273 20835601273 208356 – or – 0778 465 25200778 465 2520
Email julietmorrison@btconnect.com

Please specify name and number of people attending.  Thank you.
Only a few spaces are now left for the exclusive unveiling this art installation on #RareDisease Day.

More information about this campaign
The campaign aims to increase awareness that as many as one in 2,000 people are affected by a rare disease, many of which are relatively unknown to the general public and in some cases, even to healthcare professionals, yet they have a devastating impact on patients and families.

The idea is that by running stories in the press on people who have a rare disease, tied into the story of the campaign,that we attract 2,000 people to the Raise Your Hand website.
This event is organised and sponsored by pharma company Alexion.

More events and information about International Rare Disease Day 2014


This Rare Disease Day 2014 video is now available in seven different languages for you to enjoy and to share. With the focus on Care this year, the 2014 video poignantly demonstrates the kind of care people with rare diseases need and deserve, and the ways family members, health professionals, and the entire rare disease community are working together to provide care.

Created in Barcelona by production company These Glory Days, the Rare Disease Day 2014 video is accompanied by the music of Delorentos, who generously offered the use of their aptly named song Care For.

Besides These Glory Days and Delorentos, a big round of applause goes out to the many individuals and families living with a rare disease who appear in the video, including Maria and Judit; Luis; Roman and Mireia and Carla; Arturo and David; Carla and Bertie and Jordi; Isaac; Nacho and David; as well as the health professionals and researchers who participated. The cooperation in joining together to create the Rare Disease Day 2014 video is emblematic of the unity and solidarity patients and families, professionals and policy makers, researchers and industry are demonstrating to find treatments and care for people with rare diseases. Be a part of the Rare Disease Day momentum – share the Rare Disease Day 2014 video and let’s show the world that it is entirely possible to Join Together for Better Care.
Louise Taylor, Communications and Development Writer, EURORDIS

Feel free to organise your own Rare Disease Day locally – and let us and the following organisations know what you have planned:
Rare Disease UK http://www.raredisease.org.uk/rare_disease_day_2014.htm
And http://www.rarediseaseday.org/news
Genetic Alliance UK http://www.geneticalliance.org.uk/index.html
Facebook – Rare Disease Day https://www.facebook.com/rarediseaseday

EURORDIS http://www.eurordis.org/

Rare Disease UK: “We 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 at one of their events across the UK, 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 (This event is now full, please check back at a later date for available tickets)
Riddell Hall, Belfast – Friday 28th February 10:30am – 3pm

Contact Campaign – Rare Disease UK needs your help in contacting politicians in each of the UK’s home nations to raise awareness of rare diseases and to encourage them to attend their parliamentary events. You can download template letters and find out more information here.

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

Follow Rare Disease Day on Twitter: @rarediseaseday


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