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Learn about Williams Syndrome. The Williams Syndrome Changing Lives Foundation was formed to enhance the lives of children and adults with Williams syndrome by providing needed financial assistance with medical, educational, developmental, therapeutic and recreational resources.


Timeline Photos
Are you familiar with some of the most common medical issues associated with Williams syndrome?

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Posted: April 23, 2014, 7:04 pm
We encourage you to contact your local representatives to share your views and opinions on what is needed in the area of rare disease. Here are some resources from NORD that can help you.


Hints for Contacting Your Representatives
www.rarediseases.org
Influencing public policy to promote political and/or social change is a civic duty. People with rare disorders have been silent too long. The one constant we all must remember is that legislators have to get re-elected and they pay close attention to the views and opinions of their constituents.
Posted: April 22, 2014, 1:15 pm
With rare patient groups so scattered and small, social media has become a vital new frontier for researchers looking for clinical trial participants.


Rare Diseases Get A Chance At A Cure Thanks To The Internet
www.medicaldaily.com
Social media is highly successful with helping researchers find clinical trial patients for rare diseases.
Posted: April 22, 2014, 12:00 am
FACT: Many rare diseases appear early in life. Did you know that a disease may be considered rare in one part of the world, or in a particular group of people, but still be common in another?

Posted: April 21, 2014, 11:35 pm
The Genzyme Boston Marathon team this morning was pumped and ready to run. We thank them for being Boston Strong for rare diseases!

Posted: April 21, 2014, 7:30 pm
Have NORD's patient assistance programs helped you? We’d love to hear your story.

Posted: April 21, 2014, 3:15 pm
NORD is a member organization. Here is the current list of NORD member organizations that may be of help to you.


Current List of Member Organizations — National Organization for Rare Disorders
www.rarediseases.org
Posted: April 21, 2014, 12:52 pm
Are you planning a rare disease awareness event or fundraiser in your community? We'd love to hear about it!

Posted: April 20, 2014, 6:00 pm
Just in time for the Boston marathon, PNH patient and paired partner with the Genzyme team Amanda Foisy discusses her experience with a rare disease and what running means to her.


I have PNH, PNH doesn't have me
runningforrarediseases.org
I procrastinated my way through undergrad and grad school, and so it was no surprise that the marathon is days away and I am still struggling with what I could contribute to the team’s blog. I tex...
Posted: April 19, 2014, 6:00 pm
NORD is on the road for our regional patient meetings. There will be a hypoparathyroidism meeting for patients and families on April 25th in Dallas Texas.


Hypoparathyroidism Regional Meeting 2014: Dallas — National Organization for Rare Disorders
rarediseases.org
NORD will host a regional patient meeting for patients and families affected by hypoparathyroidism on April 25, 2014 in Dallas, TX.
Posted: April 18, 2014, 7:15 pm