I need your help. Yes, you. Whether you are a regular visitor or just happened to visit my site for the first time, I need you.
I’m on a mission to find and compile all blogs and up-to-date websites of children with rare diseases (or adults who were diagnosed as children). There are over 6000 rare diseases affecting children in the world, and I can’t do this by myself. I’ve been looking, and I’ve only found less than a dozen blogs (see my special kids links on my sidebar), and I know there are more parents like me out there.
Basically, I want to create a directory/blogroll (or whatever you want to call it) that links all these special children together to be unveiled on February 28th, the 2nd annual World Rare Disease Day. You can either leave them in the comments below or send me an email.
If you have a blog, please post this request and help me out. You can even have your visitors email/post the links on your site and you can email them to me. I’m not looking for more traffic with this project.
And if you use StumbleUpon, Digg, Facebook, etc. please click below to share this request!
I don’t know anyone who has a child with a rare disease but I’m happy to add it to Facebook and my blog!
not sure it will do much but I added to FB and I posted a message on my blog!
Great idea! You might try sending a request to the Chromosome Disorder Outreach website– they have a listserve that they send out to all their members. Here’s the website and contact info:
http://www.chromodisorder.org/
Email: info@chromodisorder.org
You might also try sending a message to Unique– CDO’s UK equivilant.
http://www.rarechromo.org
Email: info@rarechromo.org
Both these organizations have many, many families involved who have children with rare diseases, and some of them probably have websites or blogs.
There are a number of yahoo message sites with special needs children as well– you might leave a message on those and see what comes up.
I’ve got a list of special needs blogs I follow that update pretty regularly on my sidebar. You’ve already got me on your list. 🙂
Hope that helps!
~Jess
Great idea! You might try sending a request to the Chromosome Disorder Outreach website– they have a listserve that they send out to all their members. Here’s the website and contact info:
http://www.chromodisorder.org/
Email: info@chromodisorder.org
You might also try sending a message to Unique– CDO’s UK equivilant.
http://www.rarechromo.org
Email: info@rarechromo.org
Both these organizations have many, many families involved who have children with rare diseases, and some of them probably have websites or blogs.
There are a number of yahoo message sites with special needs children as well– you might leave a message on those and see what comes up.
I’ve got a list of special needs blogs I follow that update pretty regularly on my sidebar. You’ve already got me on your list. 🙂
Hope that helps!
~Jess
A friend of mine lost two babies to Spinal Muscular Atrophy. She has since dedicated her life to helping other parents of SMA children. She has fundraisers for research and has even spoken in front of Congress about the disease and funding. She runs an equipment loaning program, to help families who cannot afford the necessary equipment for their children. She is an awesome woman!
Here is her website: http://www.smasupport.com/
And she also has a memorial website for children lost to SMA (have tissue ready): http://www.oursmaangels.com
Here are a couple I found:
haveyroo.blogspot.com
http://www.juvenilepolyposis.blogspot.com/
http://poesygalore.blogspot.com/2008/11/exvotos-and-retablos-mexicanos-blog.html
http://petit-tresor72.skyrock.com/ (in French)
http://sandhoffinaz.blogspot.com/
This is a wonderful idea, and much-needed attention. Here are a couple of sites:
http://tri4joe.com/
http://www.threelittleangels.org/our_story.html
-Krista Tibbs
http://www.neurologyofangels.com
Krista’s last blog post..My Book Video!
A site about Elizabeth and info on Spinal Muscular Atrophy Type 1