29th February is Rare Disease Day – find out how you can help
24th January 2012
International Rare Disease Day 2012 – help raise awareness of rare diseases!
Please let us know what you are doing!
Please do let Rare Disease UK know if you are holding any activities to mark Rare Disease Day 2012 so they can share these activities with their members. They are happy to provide a speaker to talk about Rare Disease Day, a national plan for rare diseases etc at an event you are holding and they will be attending the event outlined below. Like last year, there will also be a pull out supplement about Rare Disease Day in the Independent newspaper, so if you would like copies to distribute, please let us know how many so we can arrange for them to be delivered to you in time for the 29th Feb.
Also, if you are holding events, remember to take photos so RDUK can include them on their website and newsletter.
stephen@raredisease.org.uk 020 7704 3141
Events and activities taking place
Rare Disease Day at the Royal Holloway University
Following last year’s successful event, Royal Holloway University, London, will be holding another awareness raising event on Rare Disease Day. All the information about the event, including exhibiting opportunities, is available on the following website: http://www.rhul.ac.uk/
You can also follow the Royal Holloway Rare Disease Day Twitter @RDD2012
Rare Disease Day in Northern Ireland
RDUK is an active member of the Northern Ireland Rare DiseasePartnership which will be launched officially on Rare Disease Day! In addition, the Patient and Client Council has produced a report looking into experiences of obtaining a diagnosis of a rare disease in Northern Ireland, which will also be launched at the event taking place in the Pavilion on Stormont Estate, Belfast at 11:30am. The event will provide an opportunity to learn more about both of these and to hear from the experiences of patients affected by rare diseases and their carers.
For more information, or to RSVP, please contact Sarah McCandles at the Patient and Client Council sarah.mccandless@hscni.net 028 90 32 1230.
Rare Disease Day in West Yorkshire
RDUK member BRADNET is holding an event in Bradford on Rare DiseaseDay. There is a high prevalence of rare conditions in West Yorkshire, and this has stimulated collaboration in research, data collection, and development of services.
Further information about the event is available here
The draft agenda is available here
To attend, or for more information about this free event, contact Donna Tattersall at donna.tattersall@bradnet.org.
Genzyme Therapeutics
In advance of Rare Disease Day, Genzyme invited the Chair of RareDisease UK, Alastair Kent, to speak at their national sales and marketing conference about how industry and patient organisations can effectively collaborate in supporting patients with rare diseases and the forthcoming UK plan for rare diseases. Genzyme’s manufacturing centre at Haverhill, Suffolk is to hold a rare disease awareness day with coffee and cakes sales on 29th February. Genzyme Ireland, in Waterford is also holding an awareness day, with a wide range of patient and political invitees
Lymphangiomatosis and Gorham’s DiseaseAlliance – Europe (LGDA)
The LGDA is hoping to raise awareness by setting up information stalls at Aberdeen Children’s Hospital and Bristol Children’s Hospital outlining whatRare Disease Day is and with information on Lymphangiomatosis including patients’ stories. This is in the hope that the hospitals will be willing to make this an annual event with other rare diseases coming forward to have their say on the day.
CSL Behring
Bio-therapeutic company CSL Behring is organising a number of internal and external awareness raising initiatives, including inviting the local MP to visit their site, media work and the production of information leaflets aboutRare Disease Day for their sales team to hand out.
Myasthenia Gravis Association (MGA)
The MGA have produced maps of rare and local treasures of architecture and history to celebrate Rare Disease Day. There are nine different maps from different regions in the UK and Ireland. An example can be seen here.
For more information, please contact the MGA (contact details are available here: http://www.mga-charity.org/
Remember if you are planning any activities, please let us know!
Political contact campaigns
As in previous years, RDUK will writing to politicians to raise awareness ofrare diseases and Rare Disease Day. We also encourage our members to do so and we will be producing template letters for you to adapt and send to your local politician.
These will be sent around at the end of this month/early February so keep an eye out!
Media work
Have you considered contacting your local newspaper or radio station about a story to raise awareness of Rare Disease Day with a case study, news on research you are conducting or any awareness raising activity you are holding? The best way to do this is by writing a press release and sending it to your local media outlet.
If you have not written a press release before, you can find a number of guides such as this (http://www.wikihow.com/Write-
You might find the “Key Messages” document in the “Additional information and other ways to get involved” section below of use.
RDUK will also be trying to generate media coverage to raise awareness on the day. It helps us to raise awareness if we have patients or family members affected by rare conditions who are willing to tell their story. If you are willing to share your experience, please fill out the form below. Also if you represent an organisation, please feel free to circulate this more widely.
Download the media volunteer form (Word doc)
Please return your completed form, if possible with a picture, tostephen@raredisease.org.uk or by post to Rare Disease UK, Unit 4D Leroy House, 436 Essex Road, London, N1 3QP.
We cannot guarantee that all volunteers will be picked by the media, but we will certainly do our best!
Additional information and other ways to get involved
Download our Rare Disease Day 2012 Key Messages here
Download the official logos, posters, banners etc here:http://www.rarediseaseday.org/
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/
RDUK Secretariat
Rare Disease UK
Unit 4D, Leroy House
436 Essex Road
N1 3QP
UK.
