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Friday, 31 January 2014

In 4 weeks time on February 28th 2014 it is international rare disease day organised by Eurodis. In the run up to this day various events and promotional campaigns are taking place to help raise awareness about invisible conditions. To find out more about the day and to see the all the easy and simple ways that you can get involved just read the rest of this blog post and then visit their website.

So what is Rare Disease Day?

"Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at the international level and by National Alliances and Patient Organisations at the national level.

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 targets primarily the general public but it is also designed for patients and patient representatives, as well as politicians, public authorities, policy-makers, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, more than 1000 events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage.

The political momentum resulting from the Day has also served for advocacy purposes. It has notably contributed to the advancement of national plans and policies for rare diseases in a number of countries.

Even though the campaign started as a European event, it has progressively become a world event, with over 70 countries participating in 2013. We hope many more will join in 2014. Our objective is for the WHO to recognise the last day of February as the official Rare Disease Day and to raise increasing awareness for Rare Diseases worldwide." - Rare Disease Day Website 

Below is  a message from the Rare Disease Day Ambassador - Sean Hepburn Ferrer. 

Interested in getting involved? Check out this video explaining the information pack available for download from the Rare Disease Day website.

On 28th Feb we shall feature a special blog post about the success of the day and hopefully share some of your stories about how you got involved. So please get in touch and let us know how you're planning to raise awareness!

Friday, 17 January 2014

This week's blog post features HandiNews International a useful website for people with all kinds of disabilities. We asked them a few questions about what HandiNews is all about so that we can share them with you!

The Disabilities Meeting Place to Share and Help Each Other

What is HandiNews International?
HandiNews International is an online resource (website and social media) for ALL who are interested in disabilities, to share information and help each other.

How can HandiNews International help me and other disabled people?
HandiNews is a practical way for you to share your stories on our website and help each other - what you've accomplished, what you've learned, what resources you need, what services you might offer, and comment on what others have done. Everyday our Twitter platform brings you news about current disability issues, successes, and a lot more. Our tweets also tell you what's going on in our website - our viewers' latest stories, our featured news, our calendar of conferences, and links to useful resources.

What is HandiNews' aim?
HandiNews International's aim is to help us better our lives and the lives of each other, through sharing and caring, and to teach others to include and welcome us.

How can people like myself get involved with HandiNews International?
It's easy to get involved with HandiNews International. Just "follow" @HandiNews on Twitter, "friend" HandiNews International on Facebook, and bookmark our website. Then share your stories, information, resources, services, thoughts, comments and questions. We're inviting you! Help others, and help yourself!

Got an idea for a future post? Make sure you follow us on Twitter @hideandseekid, like our Facebook Page or email us - hideandseekid@hotmail.co.uk. The next post will go live on the blog on Friday 31st Jan. See you then!

Friday, 3 January 2014

Firstly, I'd like to wish you all a very happy new year and hope you've had a great start to 2014! Without trying to sound very cliché by saying 'New year, new me (blog)' I would like this year to be a new start for this blog...

I started this blog back in 2011 as a platform to reach out to those with invisible disabilities & to educate others about existing invisible conditions which most of us are unaware of.

When I was diagnosed with an incurable, inherited condition called Ehlers Danlos syndrome (I'd never heard of it either) after years of pain and numerous doctors visits, I hadn't received a correct diagnosis till the age of 16. I couldn't understand how it could take so long to be diagnosed with a condition that I was born with and why hadn't it been picked up sooner? I then realised it was because EDS is one of many invisible conditions that very little is known about.

Since starting this blog it has reached so many milestones, reaching a global audience with almost 45,000 hits and it has been inspiring for me to hear you share so many of your incredible stories and journeys about the conditions that you face in day to day life yet often get unnoticed.  I hold my hands up, I've promised numerous times to upload posts far more regularly than I have (slaps wrist) but as usual I got swept up in the business everyday life, starting back at uni, working etc etc - but that's enough of my excuses.

So here is my new year's resolution, which you can help me stick too... I will start off by posting on this blog every 2 weeks, on the 1st and 3rd Friday of each month starting today before hopefully starting to upload regular weekly posts. Baby steps.

The content I upload will not be all doom and gloom, instead I want to share inspiring stories, useful websites, video links etc about all kinds of invisible conditions. But to do this I need your help, for this blog to reach its full potential I want to try and reach out to as many sufferers of invisible conditions as possible to offer support by sharing helpful info with each other and act as an extra online support network.

So could you please share this post with as many people as possible as you never know who it might reach and help. Please can you email in any info, stories, video links, organisation names, anything at all which you think may be of use to others to hideandseekid@hotmail.co.uk so that I can feature them in future posts.

Also let me know what kind of posts would you be interested in reading about? Let me know either via email, twitter or FB. But for now I'll stop rambling, I'll just say that I believe...

Together we can help make the invisible, visible. 

 Abi x

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