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Showing posts with label showcase. Show all posts
Showing posts with label showcase. Show all posts
Friday, 30 May 2014
Thursday, 6 March 2014
by Unknown on 07:55
1 comment
Official Video
In the UK a variety of events took place on the day including a Coffee morning in London, organised by Advocacy for Neuroacanthocytosis; an information day at Birmingham's Queen Elizabeth hospital and BABPA Charity Dinner in Leamington Spa, organised by NMC Midlands.
Meanwhile in Australia a Cinema Fundraiser Night happened in Tuggeranong hosted by International Society for Mannosidosis and Related Disease. There was also a picnic event in Melbourne and a Cocktail night in Bathurst, all to raise money and awareness for rare diseases!
As previously said, various events happened across the world including Jazz nights in Italy's capital city of Rome and High School assemblys in New Jersey, USA. So please do check out the website for a full list of all of the activities. BUT it doesn't end there. There are also more events to happen in the coming weeks and months in association with Rare Disease Day 2014 so make sure you keep an eye out for an upcoming event near you and keep spreading the word about rare diseases!
Meanwhile in Australia a Cinema Fundraiser Night happened in Tuggeranong hosted by International Society for Mannosidosis and Related Disease. There was also a picnic event in Melbourne and a Cocktail night in Bathurst, all to raise money and awareness for rare diseases!
As previously said, various events happened across the world including Jazz nights in Italy's capital city of Rome and High School assemblys in New Jersey, USA. So please do check out the website for a full list of all of the activities. BUT it doesn't end there. There are also more events to happen in the coming weeks and months in association with Rare Disease Day 2014 so make sure you keep an eye out for an upcoming event near you and keep spreading the word about rare diseases!
#RareDiseaseDay2014
Friday, 31 January 2014
by Unknown on 05:21
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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, 3 January 2014
by Unknown on 04:25
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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
Sunday, 15 September 2013
by Unknown on 12:30
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If you read our inspiring guest blog posts from Emily Yates you'll be familiar with the charity organisation she mentioned called Jolt Trust. We're really interested in what this small charity offer to disabled people and what they have already achieved. So we'd like to share some more info about the Jolt Trust movement with you...
"Since 1983, the Journey of a Lifetime Trust (JoLt) has been making a positive, lasting difference to the lives of hundreds of disabled, ill, abused and neglected young people. JoLt is a small charity run on a totally voluntary basis by a group of ordinary people with families and careers. It was set up in 1983 to make a positive lasting difference to the lives of disabled, ill, neglected and abused young people.Every two years, we organise expeditions all over the world for groups of young people (from fourteen to twenty one years) with significant disadvantages. All long to travel to far-away places. JoLt makes their dreams come true." - JoLt Website
Sounds amazing right? Fancy getting involved?
Well there are many ways you could help to get involved with this charity and their work. First of all is by donating so that they can continue to offer these fantastic expeditions for the disabled youngsters in years to come. If you'd like more information about this please click here.
Or you could nominate a youngster to be considered for taking part in the 2014 expedition across Africa!
"We are busy planning our next journey for July / August 2014. We aim to travel from the heart of Africa to the Indian Ocean. We will start our travels in Zambia, before heading through Botswana, South Africa, Swaziland and arrive in Mozambique a month later. We will take in the mighty Zambezi River and Victoria Falls before entering Botswana, the gateway to the Okavango Delta. South African highlights include the world famous Kruger National Park and Blyde River Canyon. The Kingdom of Swaziland will be the location for a community project and some exciting trekking, before arriving on the beaches of Mozambique to complete our journey." - JoLt Website
For more information about how to nominate please click here!
Sunday, 8 September 2013
by Unknown on 08:34
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After reading about Emily's incredible story so far we decided to ask her some questions about her involvement at London 2012 and what her plans are for the future. Here is our short Q+A session with her...
1. As a wheelchair
user, how did you find the facilities and accessibility at The Games?
I thought it was incredible.
Not only were the facilities great, they were so great that I honestly
did not have to put in any extra effort compared to an able-bodied person. The lifts and toilets were conveniently placed;
everything was lovely and flat, with vehicles to help you out if you struggled
with distance. Most of all, though,
there was always someone willing to help you out if you needed it. Such an inclusive, wonderful atmosphere.
2. Would you
encourage a disabled person to apply to be a volunteer at The Games and why?
Absolutely, and why not?
Everything you could possibly need will be available to you. You will make friends that you immediately
have a bond with, as you are all volunteering for the same reasons: to have
fun, and to make a difference to the success of the event and the enjoyment of
the athletes. I'd even say that I had an
advantage working as a disabled volunteer at the Paralympics. I felt that, a
lot of the time, I was able to communicate well with athletes who had similar
disabilities, and they were equally confident that I would be able to help them
out. My wheelchair also fell apart
during one of my shifts, and I couldn't have been in a better location for it
to be mended by all the amazing technicians!
3. What is your
favourite memory from working at London 2012?
There's so many! Of course, meeting Seb was incredible, as
was being mentioned in his speech. What
I remember most, though, is the constant buzz that surrounded London. Everyone was vibrant and happy; it made
working at the Games an absolute joy.
4. What advice would
you give to a disabled person that is considering applying for tickets to Rio?
Read the accessible guide I'm writing, which will hopefully
tell you all you need to know about making the most of your time there!
5. Tell us a bit
about your book 'An Accessible Guide to Rio' and when can we get our hands on a
copy?
Right now, the guide is still in the very early stages. The
aim, though, is to create a fully comprehensive guide that will help those with
varying disabilities to get the most out of their time in Rio. It'll let you
know where is good to visit, where you can rest your head after a busy day, and
where you can go to party with ease! Of
course, there will be lots of information about accessible transport and
tourist attractions, too. And it won't
just be suitable for those with disabilities either. The elderly and families with children in
pushchairs may also benefit from it, too.
If all goes to plan, we are hoping that the guide will be distributed
free of charge through disability organisations and networks, so that the guide
really does hit its target audience!
Emily's Twitter: @EmilyRYates
Sunday, 5 May 2013
by Unknown on 08:33
No comments
As May is EDS awareness Month every friday we will post a new blog post with updates about how people from across the world are helping to raise awareness! We'll hopefully be featuring all kinds of content from poems, to personal stories, events to images....
So if you're helping to raise awareness about EDS this month please what you're doing by sending us an email at hideandseekid@hotmail.co.uk
Also, Natalia Carrasco is helping to raise awareness by posting 31 facts about EDS for the 31 days in May. We'll be sharing these in all of our blog posts throughout the month. Here are the first 5!
Don't forget to subscribe to our future posts by selecting the subscribe option on the right hand side bar, follow us on twitter and like our Facebook page!
Oh, and our blog has now had over 30,000 hits so a massive thank you to all of you for your support in helping us to raise awareness about invisible conditions!
Sunday, 10 March 2013
by Unknown on 16:00
No comments
This is a post to remember the success of Rare Disease Day 2013 where over 70 countries across the world took part in a variety of ways to help raise awareness about rare diseases. This post will showcase some of the events and highlight the success of the day!
But first...
So, what actually happened?
On 28th February, thousands of people across 71 countries took part in helping to raise awareness. Support grew across the globe as this was the largest number of countries participating throughout the 6 years that it has been running. A variety of events were held ranging from conferences, to radio shows, sponsored runs to cake sales! Everyone pulled together and worked as a team. The day got great media coverage across the globe and opened up a lot of people eyes to what rare and invisible conditions exist.Click the link here to see how each and every country played their part!
Also, make sure you check out the Official Rare Disease Day 2013 video below:
If you didn't know about Rare Disease Day this year but wish you had got involved fear not as you can certainly get involved with Rare Disease Day 2014! Keep up to date on their twitter and facebook for the latest info as well as their website!
Next Week's Post will feature the UK service 'Find Me Good Care'.
Friday, 24 August 2012
by Unknown on 05:16
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With our technical issues sorted, our blog is back up and running with new posts up every Friday!
This documentary by Kat Williams showcases families in need and what help is available out there for them. Most importantly of all, it helps to raise awareness about invisible conditions and how important a diagnosis is when trying to cope and comprehend with your condition.
Now that's enough from me... I'll let the documentary do the talking...
Follow us on twitter: @hideandseekid
@withoutadiag
@swan_uk
Wednesday, 4 July 2012
by Unknown on 02:42
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About Invisible Illness Week 2012
September 10-16, 2012 is National Invisible Chronic Illness Awareness Week. This annual event, started in 2002 by Lisa Copen, features a variety of ways to get involved including a virtual conference September 10-14 online for free with speakers.
Below are some videos from the Invisible Illness week campaign
Stay tuned for many more posts about Invisible Illness Week 2012! #iiwk12
New post up later today: #iiwk12 - My 30 things meme
Monday, 2 July 2012
by Unknown on 07:28
No comments
Sorry for the absence of posts recently... but more updates and posts are to follow soon!
Please watch the video below showing Mimi Newman telling her story about life with EDS and how she is trying to raise awareness about the condition.
Follow us on twitter: @hideandseekid
Monday, 14 May 2012
by Unknown on 00:48
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May is Ehlers Danlos Syndrome awareness Month! This is an invisible condition that I suffer with and little is known about it around the world not only amongst the public but also professionals. Below is more information about EDS taken from the EDNF website.
What is EDS?
Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a “glue” in the body, adding strength and elasticity to connective tissue.
Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders, characterized by articular (joint) hypermobility, skin extensibility and tissue fragility. There are six major types of EDS. The different types of EDS are classified according to their manifestations of signs and symptoms. Each type of EDS is a distinct disorder that “runs true” in a family. This means that an individual with Vascular Type EDS will not have a child with Classical Type EDS.
What are the symptoms of EDS?
Clinical manifestations of EDS are most often joint and skin related and may include:
Joints: joint hypermobility; loose/unstable joints which are prone to frequent dislocations and/or subluxations; joint pain; hyperextensible joints (they move beyond the joint’s normal range); early onset of osteoarthritis.
Skin: soft velvety-like skin; variable skin hyper-extensibility; fragile skin that tears or bruises easily (bruising may be severe); severe scarring; slow and poor wound healing; development of molluscoid pseudo tumors (fleshy lesions associated with scars over pressure areas).
Miscellaneous/Less Common: chronic, early onset, debilitating musculoskeletal pain (usually associated with the Hypermobility Type); arterial/intestinal/uterine fragility or rupture (usually associated with the Vascular Type); Scoliosis at birth and scleral fragility (associated with the Kyphoscoliosis Type); poor muscle tone (associated with the Arthrochalasia Type); mitral valve prolapse; and gum disease.
What are the types of EDS?
There are six major types of EDS. The different types of EDS are classified according to the signs and symptoms that are manifested. Each type of EDS is a distinct disorder that “runs true” in a family. An individual with Vascular Type EDS will not have a child with Classical Type EDS.
How is EDS diagnosed?
The categorization of the Ehlers-Danlos syndromes began in the late 1960s and was formalized in the Berlin nosology. Over time, it became apparent that the diagnostic criteria established and published in 1988 did not discriminate adequately between the different types of the Ehlers-Danlos syndrome or between the Ehlers-Danlos syndrome and other phenotypically related conditions. In 1997, a revised nosology was written in Villefranche that redefined the types of EDS.
How prevalent is EDS?
At this time, research statistics of EDS show the prevalence as 1 in 2,500 to 1 in 5,000. It is known to affect both males and females of all racial and ethnic backgrounds.
How is EDS inherited?
The two known inheritance patterns for EDS include autosomal dominant and autosomal recessive. Specifics regarding genetic inheritance may be found by following the link below. Regardless of the inheritance pattern, we have no choice in which genes we pass on to our children.
What is the prognosis of someone with EDS?
The prognosis of EDS depends on the specific type. Life expectancy can be shortened with the Vascular Type of EDS due to the possibility of organ and vessel rupture. Life expectancy is usually not affected in the other types.
What can I do now?
The defining trait of those affected by EDS is the search for information. The rise in Internet usage has delivered a significant benefit to families affected by EDS. EDNF members are sharing information on-line and learning from each other in ways that were impossible not very long ago.
Sunday, 13 May 2012
by Unknown on 03:30
No comments
On Friday 4th may, our #invisibledisabilities day we reached 10,000 hits on the blog!
Thanks so much for everyone who supported us and got involved, helping us to reach our target. We're now well on our way to the 11,000 mark and 20,000 is our next goal! Keep posted as there shall be many updates to come about invisible conditions.
Keep spreading the word about invisible disabilities.
Next Post: Invisible conditions we learnt about on #invisibledisabilities day.
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