There are many organizations, support groups,and medical facilities. Although the best 5 I found were there links below (not in any specific order):
1. http://3ww.progeriaresearch.org/contact_us.html
2. http://rarediseases.info.nih.gov/about-ordr/pages/32/contact-us
3. http://www.madisonsfoundation.org/index.php?option=com_content&view=article&id=39&Itemid=85
4. https://www.rarediseases.org/about/contact-us
5. http://www.geneticalliance.org/contact
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