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"Working together we can secure the best use of scarce expertise and resources, maximising the health gain for all those with rare conditions" Alastair Kent OBE, Chair of RDUK

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You are here: Home / Rare Disease Day / Rare Disease Day 2010 

Rare Disease Day 2010

Rare Disease Day 2010 took place on Sunday February 28th. Rare Disease Day is an international event aimed at raising awareness of rare diseases and to ensure that rare diseases are considered a public health priority.

The theme for Rare Disease Day 2010 was "Patients and Researchers: Partners for Life". Some of the key messages of the day were:

  • There is no cure or treatment available for the vast majority of people with rare diseases. Without research this will remain the case. As a result, research is fundamental to improving the lives of people with rare diseases and their families.
  • The tagline “Patients and Researchers – Partners for Life” reflects that patient organisations can be valuable partners in research projects by raising funds, as an important source of practical knowledge and in recruiting the cohorts needed for clinical trials. Patient organisations can act as catalysts for collaboration between researchers, clinicians, industry and patients.
  • Research and development for rare diseases is restricted by a number of factors including:

A lack of mechanisms e.g. registries for recording patient information (and most patients with rare diseases are not recorded by the NHS)


Small numbers and fragmented patient populations


Difficulties in recruiting patients for clinical trials


A lack of opportunity/cost perception by the pharmaceutical industry
Difficulties in finding sustainable sources of funding

  • As a result, research into rare diseases requires collaboration including supranational collaboration, long-lasting infrastructure and sustainable sources of funding.

More information about the aims and messages of Rare Disease Day please visit: http://www.rarediseaseday.org.

Our activities to mark Rare Disease Day

Parliamentary receptions

Rare Disease UK marked Rare Disease Day with three parliamentary receptions which brought a broad range of stakeholders with an interest in rare diseases and politicians together. Please click on the images below for event reports and pictures.

Welsh Assembly

Click to visit the Welsh Assembly Reception page

Chief Medical Officer, Dr Tony Jewell at the Senedd

 

Scottish Parliament

Click to go to the Scottish Parliament event page

Iain Gray MSP with Sheila Averbuch from Advocacy for Neuroacanthocytosis

 

Northern Ireland Assembly

Click to visit the NI Assembly event page

 

Media Coverage

We worked with our members to generate publicity for rare diseases around Rare Disease Day.  

Elected representatives

Many of our members contacted their local MP/AMs/MSPs/MLAs to inform them about Rare Disease Day and about their interest in rare diseases in order to gain recognition of rare diseases as a public health priority. Many met with their elected representative at the parliamentary receptions to bring the issues to their attention.