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Rare Disease Day 2017 Supports Research

February 26, 2017

Rare Disease Day is an annual event, taking place on the last day of February, to help raise awareness about rare diseases and gain more support for the charities that support sufferers. The theme for Rare Disease Day 2017 is research, how it can bring hope to those with a rare disease and the possibilities of more understanding and perhaps, future cures.

The list of rare diseases is a long one and Rare Disease Day began in 2008 across Europe, to raise awareness of them. It has since grown to a global ‘day’ with events and support from around the world.

Kids_Special_Needs_Rare_Disease_Awareness_Support_Difficulties_Research

 

The Importance of Research into Rare Diseases

Research into rare diseases is an important, but often difficult, painstaking and expensive endeavour. But, without it, many people who suffer with one of the thousands of rare diseases there are, won’t be able to understand many important details about their illness, including:

  • How or why they got the disease or condition.
  • What the known characteristics of the disease are.
  • How they can manage the disease.
  • If they can ‘get better’ or improve.
  • If there is, or could be, a cure.

Rare_Disease_Awareness_Day_Research_Support_Understanding

 

For most of you, when we go to the doctor or hospital with a ‘common’ complaint, they have all the answers and know what will happen; how to treat it and how long it will take to get better. But, if you’re eventually diagnosed with a rare disease, many of those answers are vague, unknown or even guess work.

Research will increase the knowledge of a disease and help give sufferers and their families some answers. While they may not be the answers they were hoping for, that’s still better than simply not knowing. And that’s why Rare Disease Day 2017 is all about research.

How to Take Part in Rare Disease Day

With Rare Disease Day in its tenth year, there are many events you can join to take part in the day and help raise awareness of rare diseases and provide much needed funding for research into them.

Or, if there aren’t any Rare Disease Day events near you, why not organise one? The Rare Disease Day website has some helpful advice on how to do this. Your event can be large or small and range from a gathering, a walk or a lecture to a sponsored knit! Whatever your preferred activity, it’s likely to be suitable for an awareness and fund raising event for Rare Disease Day.

If you prefer taking part in an existing event, there are plenty to choose form up and down the country. But, there are other ways to show your support for Rare Disease Day 2017. You could become a member of one of the many charity organisations linked to the many rare diseases that there are. Just by adding your name and details you’re showing an interest and adding your support, something that will be greatly appreciated.

The Rare Disease Day Facebook page is another good option to add your support. You can follow the group and read the stories from people affected by rare diseases. Even just ‘liking’ a post can make a difference to people who suffer from or are affected by rare diseases.

For more information on rare diseases, support, charities and research into them, please take a look at the links below.

Useful resources:

https://www.raredisease.org.uk/

https://www.rareconnect.org/en

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/260562/UK_Strategy_for_Rare_Diseases.pdf

http://www.orphanet.org.uk/national/GB-EN/index/about-rare-diseases/

http://www.geneticalliance.org.uk/information/learn-about-genetics/rare-diseases/

https://www.undiagnosed.org.uk/

https://globalgenes.org/rarelist/



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Size Guide

KayCey Size Chart

SIZE CHART
UK(Age) Europeon(up to) US Chest(up to) Body Length(up to) Weight(up to) Tube Access Width
2 96cm/38" 2T 56cm/22" 44cm/18" 18kg/40lbs 8cm/3"
3-4 107cm/42" 3T-4T 60cm/24" 50cm/20" 21kg/46lbs 9cm/3.5"
5-6 116cm/46" 5-6 64cm/25" 54cm/21" 25kg/55lbs 10cm/4"
7-8 128cm/50" 7-8 69cm/27" 58cm/23" 35kg/77lbs 11cm/4.5"
9-10 140cm/55" 9-10 73cm/29" 63cm/25" 44kg/97lbs 12cm/5"
11-12 152cm/60" 11-12 85cm/33" 72cm/28" 54kg/119lbs 13cm/5"
13-14 164cm/65" 13-14 91cm/36" 81cm/32" 66kg/146lbs 14cm/5.5"

 

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