Rare Disease Day 28 February 2014

INTERPERSONAL : SCIENCES
humanistic ------------------------------------------- mechanistic
SOCIOLOGY : POLITICAL

individual

Source: http://www.rarediseaseday.org/

I am honored to stand, in her graceful place, and shine a light on a delicate group of individuals who, nevertheless, in sheer numbers are a force to be reckoned with. Thank you, Sean Hepburn Ferrer

A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000. A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time. One rare disease may affect only a handful of patients in the EU (European Union), and another touch as many as 245,000. In the EU, as many as 30 million people alone may be affected by one of over 6000 rare diseases existing. 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative. 50% of rare diseases touch children.

In the words of Audrey Hepburn, “We cannot save everyone… but the knowledge that someone is coming to their rescue… that we care as a society is ultimately as important…”. It is in this spirit that we invite you, alongside Sean Hepburn Ferrer, to Join Together for Better Care.

group - population

Winwick Hospital remembered

Image source: Metro

Rare Disease Day 2012 - reflections using h2cm

INTERPERSONAL : SCIENCES

SOCIOLOGY : POLITICAL

Is it ironic that ‘I’, this ‘self’ becomes an expert of my condition by virtue of it being rare? Is it also rare because so few must live with the emotional consequences? Yes, personalised medicine holds great promise, but please don't forget - me: this person : I don't want to be left here.	Being that expert I may even know the ICD-10 … codes for my condition. I know the symptoms very well. I know the 'current' evidence and may also be able to tell you about the gaps in the knowledge base.  My family physician learns with me. Supported by policy and united as a group what might citizen science deliver?
Your carer may be the expert because for you this rare disease means you cannot readily self-advocate. We all need to know we are not alone. If there is a role for social media here it is: "Rare but Strong Together"	For those people with rare diseases we have to help them unify in order to shout, wave and raise awareness. After all: WE seek global health don't we? Being rare is there investment in funding for research? Must there be a market first to bring forth drugs / treatments? We know about individual motivation, whither the corporate drive - social responsibility.

My prompt and thanks!: Stu Young, Royal College of Nursing Students