News
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.
New Asian Mentoring Project
19th January 2012
Raising Awareness of Alstrom Syndrome in the Asian Community
The Asian Mentoring scheme is a new project for families affected by Alstrom Syndrome. The aim of the project is to work specifically within Asian communities to raise awareness of the condition and to support families to develop a greater understanding of the complex nature of Alstrom Syndrome.
If you would like further information about the project then please contact Kerry Leeson-Beevers, Project Manager on 01709 210151 or send an email to Kerry.
If you would like to speak to someone in Urdu or Punjabi then please contact Iram Shah, Project Assistant on 07988 237664 or send an email to Iram.
Please download the Asian Mentoring leaflet here or alternatively you can request a copy be sent to you by sending an email to Kerry Leeson-Beevers.
Eat, Drink and Raise Money!
19th January 2012
Raise money for AS UK by doing something you enjoy – having friends round for dinner!
You start by creating your own “Dinner Page” on the Dinner4Good website (takes about 5 minutes) then automatic invitations will be sent from the site. Your friends then accept and donate on-line, which means you see who is coming and how much is being raised – in a click. It reduces the awkwardness of asking for money and there’s no hassle with collecting cash.
Dinner4Good takes care of everything, including the Gift Aid application, so all you need to do is eat, drink and enjoy yourselves!
Over dinner tell your friends about ASUK and they may also want to hold a Dinner4Good of their own – so the good goes on and on!
Click here to go to our Dinner4Good webpage and you will see how easy it is to host a dinner party and raise money at the same time.
Book now for our 2012 Conference
16th January 2012
Alström Syndrome UK’s next conference takes place on the 24th March 2012 at the Menzies Strathallan Hotel in Birmingham.
The rates for a standard double room are £65, executive double/ twin rooms are £80 or £95 for a larger family suite. These all include breakfast, complimentary parking and are based per room. Single rooms and family rooms are available and prices will be given to you on request.
Please book these deals early as they are only secured if you book well in advance.
The Hotels direct tel. No is 0121 224 1753 and Lucy Thomas, events co-ordinator, is dealing with our booking. Please mention Alström Syndrome UK Conference when booking to secure these offers.
If families need financial assistance to cover their accommodation costs they need to contact Kerry Leeson-Beevers or Catherine Lewis.
If you will be attending the conference or need further information please contact Kerry Leeson-Beevers on 01709 210151 or Catherine Lewis on 01803 613117
Email Catherine
Email Kerry
Click here to download the Booking Form
We look forward to seeing you there!
ASUK Winter newsletter is out now
14th December 2011
In the ASUK Winter 2010 newsletter: Read more about research and more inspirational stories from within the AS family.
Click here for a PDF or click here for a plain text document
Inspirational Family Film – Take a look
16th November 2011
Michelle Hough has made a short film of her interpretation of the beautiful Portia’s Song from Friends and Heroes.
“It features my wonderful daughter Millie and her story from birth to now. Millie was in intensive care at 5 1/2 weeks with heart failure and the road since has been a very rocky one. Millie has Alström Syndrome, she is registered blind and will continue to battle many severe medical conditions. She has and continues to inspire and amaze, we don’t know the future but we will not waste the present. Millie I adore and love you.
To raise awareness of Alström Syndrome UK please watch the video via the YouTube link and share on Facebook, Twitter and any other social networks you are involved with.
Watch the video on YouTube here.
ASUK Appears in Projects Magazine
25th July 2011
ASUK has been featured in the latest issue of science, technology and innovation magazine Projects. Not one, but two articles were published about the importance of the Big Lottery funding in aiding AS research and also the new EURO-WABB Project that has been formed to highlight the profile of rare diseases.
Click here to view both articles in an online version of the magazine (turn to pages 50 and 53).
Welcome to the all new ASUK website
18th July 2011
If you are reading this then you will know that the all new ASUK website has now been launched. The website has been redeveloped to maximise interactivity so that users can connect with each other through the forum and also comment on articles here.
There will be more regular news from us and also increased activity on our social networking sites like Facebook and Twitter in the coming months.
We have boosted our accessibility standards with the ability to increase the text size and the option to view the website in normal and high contrast versions.
We do hope you enjoy the new website experience.
