http://mellowyellowmonday.blogspot.com/
My friend Ellen and fellow bereaved mum sent me this email.
In loving memory of our two children (Avery and Addison Crompton) , who died from Campomelic Dysplasia.
My late baby son, Andrew died of the same CD 21 years ago.
http://groups.yahoo.com/group/campomelicfamilies/
Feb 28th is Rare Disease Day! To learn more, go to:
http://www.rarediseaseday.org/
Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at the international level and National Alliances of Patient Organisations at the national level
February 28th 2011 will mark the fourth International Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 25 countries. On that day hundreds of patient organisations from more than 40 countries worldwide will be organising awareness-raising activities and converging around the slogan “Rare but Equal”.
Hundreds of patient groups and their partners, coordinated by national alliances at the country level, are planning a multitude of events to draw attention to rare diseases and the millions of people who are affected by them. Awareness-raising activities are being planned across Europe, all the way to Russia, Georgia and Armenia, as well as in the US, Canada and as far as Australia, New Zealand, China and Japan!
http://www.rarediseaseday.org.nz/
The New Zealand Organisation for Rare Disorders (NZORD)
PO Box 38-538,
Wellington Mail Centre
Phone: +64 4 471 2226
Email: enquiries@nzord.org.nz
13 comments:
May their soul be in the Kingdom of God in peace. Nice entry for MYM.
This is a very good thing! My best friend does not give money to breast cancer. Not that there is anything wrong with that, but they already have so many fundings, she wants to give to cancers that have less research money coming in, and are not as widely known.
This is very interesting, Ann, thanks for bringing it to my attention and thank you for thinking of Michael.
quite an interesting post. i've never heard of CD...although it's a bit scary reading up on different kinds of diseases, knowledge is a powerful tool.
Mellow Yellow Monday @ Live in the Moment
interesting, i have no idea about this thanks for the share ... Happy MYM
I'm so sorry to hear of your loss! Awareness is the key to bring rare disease out into the light.
so sorry for your loss and thanks for sharing with us and I agree awareness is good
Hi Ann, Great information and a great idea.... We ALL need to learn more about those rare diseases ---and MORE money needs to be given for them for research. So much money is donated to some of the diseases --and not much to others. We need to remember the rare ones--and find out how to prevent them. Thanks Ann.
Hugs,
Betsy
I haven't heard this disease and I have to visit their site so I would know clearly what it is and why there is this kind of disease. So many kind of diseases now that I think medical people don't know yet and doesn't have a name yet. Thanks for sharing Ann
MYM
It's good to raise the public awareness of diseases that don't share the limelight with the high profile diseases like cancer and heart disease.
THE SEEKERS OF YELLOW
The seekers of yellow, they say,
Will have a most terrible day
Should they not behold
Cream, amber or gold
To burnish life’s dull shades of grey.
© 2011 by Magical Mystical Teacher
Oasis in Yellow
Haven't heard this disease and I am so sorry for your loss and them. May they rest in peace. Visiting here through MYM My Daily Mumbles
It's my first time to know the disease...
Thanks for dropping by, Ann
Ann I'm so sorry. Time does not dim sorrow like that.
The day for rare diseases is a good thing to know about and I appreciate your sharing the information.
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