RareConnect is an online social network for patients, families and caretakers enabling members of specific rare disease communities to connect with one another and to understand, meet and learn information from peers and medical experts in a supportive and friendly environment. It is hosted by trusted patient advocates. Patients, family members and caretakers share vital experiences on aspects of living with a rare disease. Behcet's Disease is listed under Behcet's Syndrome. RareConnect provides links to quality information and involves patient associations in the governance and growth of each community. The site translates in various languages, allowing members to connect globally. The project is a joint collaboration between EURORDIS (European Rare Disease Organization) and NORD (National Organization for Rare Disorders). To sign up for this free service, please follow the link or visit www.rareconnect.org
05/10/2012- The ABDA is on Facebook-
We are listed under American Behcet's Disease Association. Join our 2,000+ friends from all over the world! Our page is updated regularly and it's a great way to connect with other Behcet's Disease Patients and their families and caretakers. Please follow the link or visit www.facebook.com/ABDABehcets
05/10/2012- The ABDA has partnered with HealthUnlocked-
HealthUnlocked, United Kingdom, creates health focused online communities for patient organizations and specific diseases. The website has helpful information from trusted medical sources and provides support to patients and their families, while allowing them to interact with one another. It is hosted by patient advocates. The ABDA is listed under "communities." Find us by visiting American Behcet's Disease Association. To sign up for this free service follow the link or visit www.healthunlocked.com
05/10/2012- The ABDA has partnered with the Coordination of Rare Disease Registry at Sanford-
CoRDS is a national disease registry which includes all rare diseases. The CoRDS registry is headquartered at Sanford Research in Sioux Falls, South Dakota, and is supervised by Dr. David Pearce and Dr. Chun-Hung Chan and managed by Liz Donohue and Lauren Beaumont. The purpose of CoRDS is to establish a central registry of individuals with confirmed diagnoses of every rare disease. It is an innovative way to accelerate rare disease research efforts with the hopes of developing effective forms of treatment. To enroll, please click the 'CoRDS postcard' link to open the Adobe form, complete the requested fields and click the 'Submit Form' button on the upper right corner of the screen. The postcard is sent directly to CoRDS personnel who will contact you and begin the process of registration.
For web-based enrollment please follow the link or visit www.sanfordresearch.org/cords/
05/10/2012- We have partnered with Buy4 to raise funds for the ABDA-
Help support the American Behcet's Disease Association by shopping at thousands of your favorite online merchants and retailers through Buy4abda.com. Up to 30% of your purchase will help support the American Behcet's Disease Association. You won't spend a penny more and your ongoing purchases will continue to generate donations for our cause! Whether you are shopping for music, travel, clothes, electronics, or even a mortgage, your shopping will help make a difference in so many lives! Please follow the link or visit www.buy4.com/abda
05/10/2012-Update on Biomarkers Study-
Keck Graduate Institute and the ABDA are pleased to announce that as of today, we have successfully enrolled 57 patients in the Biomarkers Study! Thank you for the overwhelming response. We are truly grateful for your support!
Looking for the Yahoo Group?
Whole Body Donation- Read the story of Kelly Fryer and the courageous decision of her loving husband to donate Kelly's body to research. It covers the last days, his journey and what it took, both physically and mentally, to carry out her wishes. Click here for more info.
The Current State of Behcet's Disease is a Podcast! Dr. Hasan Yazici gave this talk to ABDA members at the Behcet's Syndrome Center in NYC - and you can listen to it free! Click here to listen to the PodCast.
Behcet's Disease Featured on Discovery Health Channel-
If you would lke to watch the Discovery Health Channel's "Mystery Diagnosis" show featuring Joanne Zeis' search for a diagnosis of Behcet's, contact Joanne at jzeis@charter.net
It's available online at no charge. (Unfortunately, copies of the show are not available.)
Click here or schedule your appointment by calling (646)501-7234. Fax (646)501-7234. Please note: Dr Yazici's office has moved as of 05/01/2012. The new address is: 333 East 38th Street, 4th Floor
New York, NY 10016
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