Raising our hands to support Rare Diseases!

Rare Disease Day 2015

Tomorrow, February 28th, is Rare Disease day. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. The campaign primarily targets the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases. It is recognised in countries all around the world and this year will be held on 28th February (in a leap year it is held on the 29th February, a rare day).

The complex nature of rare diseases, coupled with limited access to treatment and services, means that family members are often the primary source of solidarity, support and care for their loved ones. The Rare Disease Day 2015 theme Living with a Rare Disease pays tribute to the millions and millions of parents, siblings, grandparents, spouses, aunts, uncles, cousins, and friends whose daily lives are impacted and who are living day-by-day, hand-in-hand with rare disease patients. Typically chronic and debilitating, rare diseases have enormous repercussions for the whole family. Living with a Rare Disease becomes a daily learning experience for patients and families. Though they have different names and different symptoms, rare diseases impact the daily lives of patients and families in similar ways.

Raise and Join Hands for Rare Disease Day

The Genomics Policy Unit, University of South Wales, and Telling Stories Understanding Real Life Genetics project teams work to educate health professionals about genetics/genomics and healthcare practice, and engage with the public about genetic/genomic issues in everyday life. Our Telling Stories website has over 100 real life stories from those affected by genetic conditions, many of which are rare. We are delighted to be supporting the campaign for Rare Diseases and to raise our hands for Rare Disease Day 2015.

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GPU & Telling Stories team members raise their hands to support Rare Disease Day 2015

 

You can show your support for Rare Disease Day by uploading a photo of you, with friends, families or colleagues, raising your hands to the Rare Disease Day website!

About Rare Diseases

A rare disease is defined by the European Union as one that affects less than 5 in 10,000 of the general population. There are between 6,000 and 8,000 known rare diseases and around five new rare diseases are described in medical literature each week. One in 17 people, or 7% of the population, will be affected by a rare disease at some point in their lives, this equates to approximately 3.5 million people in the UK and 30 million people across Europe. In the UK, a single rare disease may affect up to about 30,000 people. The vast majority of rare diseases will affect far fewer than this – some will affect only a handful, or even a single person in the whole of the UK:

  • 80% of rare diseases have a genetic component
  • Often rare diseases are chronic and life-threatening
  • Rare diseases can be single gene, multifactorial, chromosomal or non-genetic
  • 75% of rare diseases affect children, and 30% of rare disease patients die before their fifth birthday
  • Rare diseases include rare cancers such as childhood cancers, and some other well known conditions such as cystic fibrosis and Huntington’s disease.

In Wales Rare Disease Day 2015 is being marked by holding an event at the Senedd on Tuesday March 3rd. Further details can be found on the Rare Disease UK website.

 

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