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Dear RDUK member,

We have several events to tell you about in this edition along with further information around Rare Disease Day. In this edition, you can find information on:

- The Wales Rare Disease Day reception: less than one week to go!

- Contact Campaign

- Other ways to get involved!

- Navigating the NHS Maze in England: free workshop for patient organisations

The Wales Rare Disease Day reception: less than one week to go!

To mark Rare Disease Day, we will be holding receptions across the UK. Our Welsh reception is now less than a week away. Only a handful of tickets are still available so if you would like to attend please be quick!

You can sign up here: Welsh Assembly, Cardiff - Tuesday 11th February 6pm - 8pm

If you are attending please contact your local politician to encourage them to show their support and attend, for template letters and more information please click here.

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.

Our Westminster event is now full, if you have registered for the event and can no longer attend please cancel your tickets so that others can attend.

To register at one of our other events across the UK, please follow the links below:

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

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

Contact Campaign

We need 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 our parliamentary events. You can download template letters and find out more information here.

Other ways to get involved!

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

Follow Rare Disease Day on Twitter: @rarediseaseday

Join the facebook group:

Navigating the NHS Maze in England: free workshop for patient organisations

Ever had questions about the NHS but not known who to ask? Feel like you should be receiving more care but don’t know where to go?

In order to help you get answers to all your questions and get your head around how all the pieces of the NHS jigsaw fit together, Genetic Alliance UK would like to invite you to attend one of our ‘Navigating the NHS Maze’ workshops. These are free to attend and travel bursaries are available.

When and where?

We will be holding two workshops, one in London (March 11th) and one in Leeds (March 18th). The London event will be at etc venues in Victoria (One Drummond Gate, Pimlico, SW1V 2QQ). The Leeds event will be at the Leeds Met Rose Bowl (Portland Crescent, Leeds, LS1 3HB). Both will start at 10.00 and finish by 15.30.

Workshop focus: getting to grips with specialised services in the new NHS With a mix of talks, Q&A sessions and lively group discussion, the workshop will help you navigate your way through the NHS maze and find out who is responsible for what, where the money comes from and how the NHS works with other key health and social care providers – ensuring that all your questions are answered along the way.

The workshops will include talks from important stakeholders and commentators on the NHS, including James Palmer from NHS England, Catherine Foot from the King’s Fund and members of the Genetic Alliance UK team.

A preliminary agenda for the workshops is available here.

Travel bursaries

To ensure as many patient organisations as possible are able to attend, we are offering travel bursaries of up to £100 on a first-come first-served basis. These are available to individuals or small patient groups with an annual income of less that £300,000. We have a limited number of bursaries so will only be able to award one per organisation, with decisions made at the discretion of Genetic Alliance UK.

If you are interested in attending, please complete the form available here and email it to Julian ( before 28th February.

Thanks, Alan! I'd join the fun, but I live in the States... ;o(

RareDisease Day is a Global Awareneness checkout

22 days to go !

Who knew? Thanks again Alan!

there are many events in the US too.

there is a event in Washington DC (weblink to follow)

Appreciate the web-links! I live in Michigan, which is quite far from Washington DC, although I did go on the other site you sent, and noticed a few US events!

Your very Welcome = Patients helping Patients we are here to help

keep in touch


Ataxia South Wales

Raredisease Day parliamentary reception 11th February hosted by Rebecca Evans AM