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Here and committed to the rare disease community

28/02/18
 
Rare Disease Day marks an important opportunity for us to join forces with our partners and show our commitment to those affected by rare diseases. Raising awareness of these conditions, and the impact they have, in turn increases understanding and makes sure the voice of rare disease patients is heard.

 

At Pfizer, we are here for the rare disease community. Here to listen, learn and make a difference in order to work towards a brighter future for people affected by some of the most life changing conditions.

 
How rare is rare?

In the UK, a disease is defined as rare when it affects fewer than 5 in 10,000 of the general population. Although these diseases may be individually rare, collectively they are common as there are approximately 7,000 different types of rare diseases and disorders, with more being discovered each day.1 The majority of rare diseases are caused by faulty genes and sadly half of people affected are children, with a third not living to see their fifth birthday.2

 

Six degrees of rare disease

Given the collective prevalence of rare diseases, it is likely most people are around six connections removed from someone affected by a rare disease. It may be a person is affected directly, or through a ‘friend of a friend’, either way it is important to recognise the impact is widespread.

From an often exhausting diagnosis journey, to the feeling of being alone, those with rare diagnoses and their families face a lot of unique challenges that may be difficult for others to understand.

 

A vision for the future.

Through connecting with the rare disease community, we can further increase our understanding and importantly show our commitment. Despite the many challenges, progress has been made in diagnosing, treating, and even preventing a variety of rare diseases. However, there is still much more to be done. At Pfizer, we are committed today and every day to do our part for the rare disease community. By working together we can ensure those affected can benefit from potentially lifesaving and life changing innovations.

 

References

  1. Rare Disease UK. Available at: https://www.raredisease.org.uk/what-is-a-rare-disease/ Last accessed February 2018
  2. Genetic Alliance. http://www.geneticalliance.org.uk/information/learn-about-genetics/rare-... Last accessed February 2018

 

 

PP-GIP-GBR-3130 / February 2018