Rare Disease UK Celebrates First Anniversary
 

 

Rare Disease UK, the National Alliance of key stakeholders including patient organisations, clinicians, academics, pharmaceutical industry and individuals is celebrating its first anniversary.

We were established back in November 2008 following the European Commission’s Communication on Rare Diseases: Europe’s challenges. The Communication highlighted the unmet needs of people with rare diseases and their families. These include unnecessary delays in diagnosis, a lack of access to integrated care and support, the lack of information available and a lack of research being conducted.

On the back of the Communication, we successfully campaigned for the adoption of the Council of the European Union’s Recommendation on an action in the field of rare diseases in June this year. The Recommendation calls on member states to elaborate plans or strategies to deal with rare diseases. We are campaigning for the implementation of a strategy for integrated service delivery for rare diseases to ensure quality care and the efficient use of limited NHS resources and scarce expertise.

As well as the adoption of the Council Recommendation, our achievements to date include:

• We have developed links with key officials in all four governments and NHSs of the UK
• We have the support of a broad range of stakeholders including over 90 patient organisations, pharmaceutical companies, clinicians, academics and individuals
• We have established five Working Groups comprising of experts from a variety of fields to investigate various aspects of a strategy for rare diseases  
• We have provided a single voice to drive forward a strategy for rare diseases

Together we will build on the achievements of the past year to ensure that in future the needs of people with rare diseases and their families are no longer forgotten, they do not have to struggle to access adequate and timely care and that NHS resources for people with rare diseases are no longer used in an inefficient and ineffective manner.

We are very grateful to our members for their support over the past year and we look forward to working together to face the challenges ahead.