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Welcome to the ABDA's online community for
Behçet's patients, caregivers, and loved ones.
We are glad you stopped by!
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Thank you for making the 2012 Walk for Behcet's Disease in Michigan a success! The ABDA wishes to express much gratitude to XOMA Corporation and to all our volunteers, walkers, donors, friends and sponsors. We could not have done it without your help! THANK YOU!
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ONGOING RARE DISEASE STUDY
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If interested in participating in the IDENTIFICATION AND CHARACTERIZATION OF DIAGNOSTIC RARE DISEASE BIOMARKERS STUDY, please review the Consent Form
(download below)
If you decide to participate, please complete and attach a list of the medications you are currently taking, your age, sex, phone number, email and mailing address. Fax the signed Consent Form (no cover sheet needed) and additional information to (480)247-5377 or mail to: ABDA P.O. BOX 80576 Rochester, MI 48308
Questions? Please email
Dr. Mirta Avila Santos at mavilasantos@behcets.com or
leave a message on the ABDA hotline at 1-(800)-723-4238 or at 1-(631)656-0537.
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Researchers at Keck Graduate Institute (KGI) in Claremont, California, are studying serum samples in an attempt to identify and characterize new diagnostic biomarkers of cells, proteins and or nucleic acids of rare diseases. The study is funded in part by a grant from the National Science Foundation. The National Organization of Rare Disorders (NORD) is a partner and plays and advisory role. The project is designed to provide a better understanding of the similarities and differences in patients of rare disease populations and to ultimately help select specific forms of treatment. Healthy family members may participate as part of the control group.
At this time, the study is recruiting Behcet's patients and their healthy family members living in the United States. Serum samples from Behcet's patients will be obtained during the course of the patient's next routine lab work procedures as scheduled through their primary physician. The samples will then be sent to the KGI lab in California. The ABDA serves as the "firewall" for patient confidentiality. Kits for the shipment of samples and labels covering shipping costs of the kits will be provided by Keck Graduate Institute.
Consent Forms MUST be received before kits are sent out.
Thank you for your interest and participation!
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Download Consent Form by Clicking HERE.
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Perfect to raise awareness!
ABDA AWARENESS
BRACELETS!
Now you can get as many as you'd like with a simple tax-deductible donation!
CLICK HERE TO ORDER!
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Behçet's Disease Explained...
The ABDA has released this informational video on YouTube to
spread awareness and help others to gain an understanding of
this rare and mysterious disease. PLEASE - pass it on!
If you can't view this video, click here.
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News in the
Behçet’s Community
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09/14/2012- NIH Director Francis Collins has just announced (9:30 a.m. Sept. 14) the appointment of Christopher Austin, MD, to serve as first director of NIH "NCATS", a unit dedicated to translating promising basic research to (ultimately) treatments for patients. http://www.nih.gov/news/
08/01/2012-
The NIH
is working with the Behcet’s population. Our
Behcet’s community is invited to participate in the 2 studies taking place at the NIH at this
time. Here are the web links-
07/09/2012- The FDA Safety and Innovation Act was signed today. The Act is a monumental step toward the development of safe and effective treatments for millions of Americans with rare diseases.The FDASIA contains the most groundbreaking measures for
rare disease patients and their families since the Orphan Drug Act of 1983. The approval culminates years of advocacy, education and building of relationships by NORD.
NORD
President and CEO Peter L. Saltonstall said he was pleased that NORD
was able to provide successful leadership in developing the legislation
with the FDA and in guiding its enactment by the Congress. "We
at NORD set very high goals when the legislative process began a few
years ago, and I am delighted that the legislation includes provisions
that will advance patient access to safe and effective therapies. This
legislation represents true progress for people with rare diseases, who
often struggle to access treatments for their disorders. Our heritage, understanding, leadership and commitment to the
community uniquely positioned us to identify and articulate the needs of
people with rare diseases. Today's
signing adds to NORD's 30-year history of driving landmark legislation,
which would not have been possible without the sustained efforts of our
members and policy partners."- Peter Saltonstall.
The FDASIA renews user fees to
support the FDA over the next five years to fund a share of the agency's
review of drugs and medical devices.
Specific to the rare disease community, the Act provides the following:
- accelerated patient access to new medical treatments
- the development of Humanitarian Use Devices (medical devices for small patient populations)
- accelerated development of "breakthrough therapies" -- those that show early promise
- enhanced FDA consultation with rare disease medical experts
- a rare pediatric disease priority review voucher incentive program
- resolution of conflict-of-interest issues that kept voices of rare disease medical experts from being heard
"We
are grateful for the hard work, leadership and collaboration provided
over the past two years by our member organizations, policy partners,
the Members of Congress, the FDA and the National Institutes of Health.
NORD looks forward to continued partnership on this legislation and
future opportunities to support the issues that deeply affect the rare
disease community." Peter Saltonstall.
The ABDA is grateful to NORD for their tireless effort on behalf of all rare disease communities.
06/22/2012- ABDA SELECTED TO PARTICIPATE IN THE GRDR PILOT PROGRAM-
ORDR has selected 34 organizations to participate in the GRDR pilot program. 19 organizations have patient registries and 15 organizations do not have registries. Information provided by patient organizations, in response to an RFI, was evaluated according to selection criteria and scored by a review committee. Organizations were selected based on their scores and in attempt to have representation across many rare diseases and organization size. The Office of Rare Diseases Research (ORDR), National Center for Advancing Translational Sciences (NCATS), NIH in collaboration with PatientCrossroads, Children Hospital of Philadelphia and WebMD, has launched a pilot program to establish a Global Rare Diseases Patient Registry and Data Repository (GRDR).
The goal is to create a resource of aggregated de-identified patient information from rare disease patient registries to facilitate clinical trials, translational research, comparative effectiveness research, and analyses of data across many disorders and ultimately drug developments and therapeutics for the millions of rare disease patients.
The long term goals of the GRDR is develop a sustainable resource with governance structures and an organizational architecture guided by open-science principles; and provide a sustainable resource funded by private-public partners. The ABDA is honored to be part of this project.
06/17/2012-The ABDA is seeking volunteers for the 2012 Walk for Behcet's-Michigan. For information, please visit www.behcets.com/walkregistration/2012 or contact the ABDA at 1-(631)656-0537. Thank you in advance!
06/05/2012- From our friends at the Vasculitis Foundation-
The Vasculitis Foundation is hosting the Atlanta Vasculitis Symposium on
Saturday, July 20-21, 2012 at Emory University Hospital, 1364 Clifton Road, Atlanta, Georgia 30322. The one-day symposium for patients, family members, friends and health care professionals will include lectures, breakout sessions, a welcome reception and a happy hour reception.
The event is an opportunity to learn from some of the world's finest vasculitis experts about the most current and exciting advances being made in the field of vasculitis. In addition, participants will have the chance to meet other attendees and share stories and experiences.
Registration: $65 until Saturday, July 14, 2012. Please note- Pre-registration is required. NO onsite registration. Registration is limited to 180 people.
For more information or to register, contact the Vasculitis Foundation at:
1- (816)-436.8211.
The registration fee includes continental breakfast, lunch, morning/afternoon breaks and the Friday evening Welcome Reception.
The VF has planned a wonderful program and will include a session on Behcet's Disease.
06/02/2012-The 3rd Annual Golf for Behcet's Disease event in Troy, Michigan, was a great success! We thank our donors, golfers, volunteers and XOMA Corporation for their constant support and generosity.
06/01/2012- As of today, the ABDA has enrolled 67 patients and their family members in the "Identification and Characterization of Diagnostic Rare Disease Biomarkers." Our gratitude goes out to the participants and to Keck Graduate Institute (KGI), Dr. Jim Osborne and Dr. Jim Sterling, Principal Investigators, for their contributions, support and assistance .
05/12/2012- DR. YUSUF YAZICI IS ACCEPTING BEHCET'S PATIENTS AT A NEW LOCATION-
THE CENTER FOR MUSCULOSKELETAL CARE
NYU HOSPITAL FOR JOINT DISEASES
BEHCET'S SYNDROME CENTER
Click here to schedule an appointment.
Please note the change of address and phone number, as the office has moved.YUSUF YAZICI, MD
333 East 38th Street, 4th Floor
New York, NY 10016
Tel. (646)501-7400
Fax (646)501-7234
05/10/2012- The ABDA has partnered with RareConnect-
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
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 ChannelIf you would like to watch the Discovery Health Channel's "Mystery Diagnosis" show featuring Joanne Zeis' search for a diagnosis of Behcet's Disease, contact Joanne at joanne@behcetsdisease.com
It's available online at no charge. (Unfortunately, copies of the show are not available.)
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