I've been invited on behalf of the HMSA to attend the Rare Disease Launch Day at the House of Commons in February. Rare Disease UK is part of GIG (genetic Interest Group) that we are members of.
The event is also open to members of the public if anyone is interested in attending - they are holding a day in different Countries as well - so there maybe one being held by you.
I will be including a write up about the day in the Spring issue of our newsletter to keep you informed of what it's all about.
See http://www.rarediseaseday.org for more information.
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Rare Disease Launch Day
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Rare Disease Launch Day
by CathyE » Fri Jan 23, 2009 12:13 am
It's amazing how far off you can smell
the aroma of Bulls??!!
the aroma of Bulls??!!
- CathyE
- newbie
- Posts: 28
- Joined: Thu Sep 02, 2004 6:57 pm
- Location: Nailsea, Bristol
Re: Rare Disease Launch Day
by barkingmad » Fri Jan 23, 2009 12:14 am
Yeh! Rub it in Cathy! LOL So unfair I cant go with you but alas I have a date with Prof G and son!
barkingmad (Donna)
HMSA SENIOR MEDICAL LIAISON OFFICER/ ADMINISTRATOR
Retired RMN, HEDS, Fibro,
3 children,
eldest son, HEDS, dyspraxia, IBS, ADHD, ASD
middle son, HEDS,
youngest daughter HEDS, dyslexia
HMSA SENIOR MEDICAL LIAISON OFFICER/ ADMINISTRATOR
Retired RMN, HEDS, Fibro,
3 children,
eldest son, HEDS, dyspraxia, IBS, ADHD, ASD
middle son, HEDS,
youngest daughter HEDS, dyslexia
- barkingmad
- HMSA Staff
- Posts: 3077
- Joined: Sun May 25, 2008 11:48 pm
- Location: plymouth
Re: Rare Disease Launch Day
by cara09 » Fri Jan 23, 2009 1:48 pm
Hi,
I have emailed them to find out how I can get involved in the campaign. It seems an ideal opportunity to raise awareness for HMS. I will let you know what sort of materials they will provide me to help out so that maybe others could do the same as well.
Cara
I have emailed them to find out how I can get involved in the campaign. It seems an ideal opportunity to raise awareness for HMS. I will let you know what sort of materials they will provide me to help out so that maybe others could do the same as well.
Cara
HMSA SOCIAL MEDIA COORDINATOR.
BRISTOL SUPPORT GROUP LEADER & TEMP LIVERPOOL SUPPORT GROUP LEADER.
My Blog: http://hypermobilitycampaign.blogspot.com/
BRISTOL SUPPORT GROUP LEADER & TEMP LIVERPOOL SUPPORT GROUP LEADER.
My Blog: http://hypermobilitycampaign.blogspot.com/
-
cara09 - enthusiast
- Posts: 254
- Joined: Fri May 02, 2008 11:27 pm
- Location: St George, Bristol, UK
Re: Rare Disease Launch Day
by cara09 » Sat Feb 28, 2009 9:54 pm
Hi,
It is offically Rare Disease Day today. I had another look on the website and was reminded that there is a section where you can 'Tell Your Story'. One of the things that you can do is upload a picture of youself on the site and add a testimony about your condition. I have just done this to help raise awareness of HMS. If you plan to upload a picture I recommend that you mention HMS or EDS in the title of the picture because this is shown when people hover over the images on the Photowall.
Tell Your Story
Mod edit - fixed link.
Cara
It is offically Rare Disease Day today. I had another look on the website and was reminded that there is a section where you can 'Tell Your Story'. One of the things that you can do is upload a picture of youself on the site and add a testimony about your condition. I have just done this to help raise awareness of HMS. If you plan to upload a picture I recommend that you mention HMS or EDS in the title of the picture because this is shown when people hover over the images on the Photowall.
Tell Your Story
Mod edit - fixed link.
Cara
HMSA SOCIAL MEDIA COORDINATOR.
BRISTOL SUPPORT GROUP LEADER & TEMP LIVERPOOL SUPPORT GROUP LEADER.
My Blog: http://hypermobilitycampaign.blogspot.com/
BRISTOL SUPPORT GROUP LEADER & TEMP LIVERPOOL SUPPORT GROUP LEADER.
My Blog: http://hypermobilitycampaign.blogspot.com/
-
cara09 - enthusiast
- Posts: 254
- Joined: Fri May 02, 2008 11:27 pm
- Location: St George, Bristol, UK
Re: Rare Disease Launch Day
by cara09 » Sun Mar 01, 2009 9:24 pm
Hi,
My picture of Richard is now displayed on the website. His photo is B&W and is currently in the top line of the Photowall and says "Hypermobility Syndrome" when you hover over it. Click on the photo and you can see it in full along with the testimony about HMS that I wrote.
Rare Disease Day Photowall
Mod edit - url fixed.
The direct link to the picture etc is here
Cara
My picture of Richard is now displayed on the website. His photo is B&W and is currently in the top line of the Photowall and says "Hypermobility Syndrome" when you hover over it. Click on the photo and you can see it in full along with the testimony about HMS that I wrote.
Rare Disease Day Photowall
Mod edit - url fixed.
The direct link to the picture etc is here
Cara
HMSA SOCIAL MEDIA COORDINATOR.
BRISTOL SUPPORT GROUP LEADER & TEMP LIVERPOOL SUPPORT GROUP LEADER.
My Blog: http://hypermobilitycampaign.blogspot.com/
BRISTOL SUPPORT GROUP LEADER & TEMP LIVERPOOL SUPPORT GROUP LEADER.
My Blog: http://hypermobilitycampaign.blogspot.com/
-
cara09 - enthusiast
- Posts: 254
- Joined: Fri May 02, 2008 11:27 pm
- Location: St George, Bristol, UK
Re: Rare Disease Launch Day
by rubygloom » Mon Mar 02, 2009 2:54 pm
its a lovely photo and you did well to describe what the diease is!
i looked at every photo and hardly anyone else did so im none the wiser on most of them except the few i have heard of
i looked at every photo and hardly anyone else did so im none the wiser on most of them except the few i have heard of
Robot 3..
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rubygloom - Member
- Posts: 199
- Joined: Sat Jul 05, 2008 11:49 pm
- Location: worthing, west sussex
Re: Rare Disease Launch Day
by barkingmad » Thu Mar 12, 2009 10:40 pm
Anybody have any feedback on attending the day events around the country? 
barkingmad (Donna)
HMSA SENIOR MEDICAL LIAISON OFFICER/ ADMINISTRATOR
Retired RMN, HEDS, Fibro,
3 children,
eldest son, HEDS, dyspraxia, IBS, ADHD, ASD
middle son, HEDS,
youngest daughter HEDS, dyslexia
HMSA SENIOR MEDICAL LIAISON OFFICER/ ADMINISTRATOR
Retired RMN, HEDS, Fibro,
3 children,
eldest son, HEDS, dyspraxia, IBS, ADHD, ASD
middle son, HEDS,
youngest daughter HEDS, dyslexia
- barkingmad
- HMSA Staff
- Posts: 3077
- Joined: Sun May 25, 2008 11:48 pm
- Location: plymouth
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