Welcome to the ABDA's online community for Behcet's patients, caregivers, and loved ones.
We are glad you stopped by!
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, all our volunteers, walkers, donors, patients, friends and sponsors. Thank you for your donations!
It's never too late to donate to the ABDA. Like many other non-profits, the ABDA is in need of assistance to continue its mission. Our organization operates solely through donations and premier memberships.
If you would like to donate, click on one of the "DONATE" links on this page.
Again, thank you very much. We appreciate your continued support and generosity!
The ABDA Board, Staff & Volunteers
ONGOING RARE DISEASE STUDY
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.
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. Please allow 7-10 days for delivery.
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!
FREE One Year Membership to the Vasculitis Foundation Through a new partnership with the Vasculitis Foundation, ABDA members can receive a free one-year membership. (Must be a resident of the United States)
MENINGITIS OUTBREAK RELATED TO STEROID INJECTIONS- 90% of those who were potentially affected have been contacted by the CDC as of this past Friday. They plan to reach everyone who may have been exposed to warn them about symptoms, which can include severe headache, nausea, dizziness and fever. The latest update follows-
By Associated Press, Updated: Monday, October 15, 5:31 AM
ATLANTA- Scattered across the carefully landscaped main campus of the Centers for Disease Control and Prevention are the staff on the front lines fighting a rare outbreak of fungal meningitis: A scientist in a white lab coat peers through a microscope at fungi on a glass slide. In another room, another researcher uses what looks like a long, pointed eye dropper to suck up DNA samples that will be tested for the suspect fungus.
Not far away in another building is the emergency operations center, which is essentially the war room. There’s a low hum of voices as employees work the phones, talking to health officials, doctors and patients who received potentially contaminated pain injections believed to be at the root of the outbreak. Workers sit at rows of computers, gathering data, advising doctors and reaching out to thousands of people who may have been exposed. Overall, dozens of people are working day and night to bring the outbreak under control. More than 200 people in 14 states have been sickened, including 15 who have died.
This strain of meningitis isn’t contagious and doesn’t spread between people. It is likely isolated to the contaminated steroid, produced by the New England Compounding Center in Framingham, Mass.
“This is a very unusual infection,” said Dr. John Jernigan, a CDC medical epidemiologist who is leading the clinical investigation team for the outbreak response. “So, treatment recommendations, diagnostic recommendations are all going to be new, and we’re learning as we go on this one.”
Meningitis, an inflammation of the membranes surrounding the brain and spinal cord, is not uncommon. But it is usually caused by bacteria, and it is very unusual to see it in patients with normal immune systems, Jernigan said. This strain is caused by a fungus that is common in dirt and grasses — people routinely come into contact with it without getting sick — but it has never before been identified as the cause of meningitis.
By Friday morning, officials believed they had reached about 90 percent of those who were potentially affected, Jernigan said. They planned to continue trying to reach every person to see if they’ve had problems and to warn them to be on the lookout for symptoms, which can include severe headache, nausea, dizziness and fever. The CDC says many of the cases have been mild, but some people had strokes.
A meeting is held each morning to review overnight developments and plot a course of action for the day, and another at the end of the day summarizes the day’s developments and looks ahead to the next day. Maps on big screens in the front of the emergency operations center track the states where the tainted medications were sent and the tally of cases reported in affected states.
A few steps away in the joint information center, another team works to keep the information about the outbreak on the CDC’s website up to date and disseminate information via the media and other outlets.
In another building on the campus tucked away in the northeast corner of Atlanta, in a part of the CDC that specializes in fungal infections, about 15 scientists in the reference and research labs are logging 12 hours or more a day and working through weekends to test samples coming in from around the country.
Because the lab scientists had never worked with this particular fungus in cerebrospinal fluid before, they had to quickly develop new tests to detect it before they could start analyzing the hundreds of samples — cerebrospinal fluid samples, cultures and bits of tissue — sent in from around the country, research lab team leader Ana Litvintseva said.
Dressed in a white coat Friday, Shawn Lockhart, the fungal reference lab team leader, peered through a microscope as images of what looked like red pea pods appeared on a computer screen next to him. Many other closely related fungi look similar, but a tiny dot at the end of a pod told him he was looking at the fungus believed to be at the root of the outbreak.
Normally, the reference lab works on difficult samples sent in from state health departments, while the research lab works on research projects. But the scale of this outbreak means those projects are mostly being shelved at the moment.
“The scale is much, much bigger than we would normally work with,” said research lab team leader Ana Litvintseva said. “We are working every weekend and people are here 12 to 13 hours at a time and we’re testing samples nonstop.”
September 27, 2012-
XOMA Announces Servier Has Initiated Phase 3 Gevokizumab Trial in Patients With Behcet's Uveitis
BERKELEY, Calif., Sept. 27, 2012 (GLOBE NEWSWIRE) -- XOMA Corporation (Nasdaq:XOMA) today announced its partner, Servier has received authorization to initiate the Servier-sponsored Behçet's uveitis Phase 3 clinical trial in several European countries. The study is titled A randomisEd, double-masked, placebo-controlled studY of the Efficacy of GevokizUmAb in the tReatment of patients with Behçet's Disease uveitis (EYEGUARD™-B). The objective of this study is to evaluate the efficacy of gevokizumab as compared to placebo on top of current standard of care (immunosuppressive therapy and oral corticosteroids) in reducing the risk of Behçet's disease uveitis exacerbations and to assess the safety of gevokizumab.
"Behçet's uveitis patients now have the opportunity to participate in the gevokizumab Phase 3 clinical trial designed specifically for their unique condition," stated John Varian, Chief Executive Officer of XOMA. "Servier's commitment to this underserved market merits recognition, and we continue to be impressed by their team's passion to design the best trial to determine gevokizumab's efficacy in treating this disease."
"Servier is committed to developing innovative treatments for diseases with clear unmet medical needs, such as Behçet's disease. In addition, we strongly believe gevokizumab has a real potential in other inflammatory diseases," said Emmanuel Canet, MD, PhD, President R&D Servier.
The global EYEGUARD-B study is designed to enroll 110 patients with a history of Behçet's disease uveitis with ocular involvement of the posterior segment who have experienced a recent ocular exacerbation that was treated successfully with high doses of corticosteroids. Patients will be randomized to either a 60mg dose of gevokizumab or placebo administered subcutaneously every four weeks on top of their current immunosuppressive and corticosteroid therapies. The study's primary endpoint is the time to first acute ocular exacerbation, which will be measured once a predefined number of exacerbations have been observed.
About Gevokizumab
Gevokizumab (XOMA 052/S 78989) is a potent monoclonal antibody with unique allosteric modulating properties and the potential to treat patients with a wide variety of inflammatory diseases and other diseases. Gevokizumab binds strongly to interleukin-1 beta (IL-1 beta), a pro-inflammatory cytokine that has been shown to be involved in Behçet's and other forms of non-infectious uveitis, cardiovascular disease, and other auto-inflammatory diseases. In binding to IL-1 beta, gevokizumab inhibits the activation of the IL-1 receptor, thereby modulating the cellular signaling events that produce inflammation.
Servier is XOMA's development and commercialization partner for gevokizumab. XOMA holds rights to gevokizumab in the U.S. and Japan for non-cardiometabolic indications, including non-infectious uveitis, acne, and erosive osteoarthritis of the hand for which clinical studies are ongoing. Information on all gevokizumab clinical studies can be found at www.clinicaltrials.gov.
Gevokizumab has been granted Orphan Drug Designation by the U.S. Food & Drug Administration (FDA) for the treatment of non-infectious intermediate, posterior, or pan-uveitis, or chronic non-infectious anterior uveitis.
About Behçet's Disease and Behçet's Uveitis
Behçet's (pronounced beh-CHETS) disease is an orphan disease that causes chronic inflammation of the blood vessels, or vasculitis. Major symptoms can affect the neurological, pulmonary, gastrointestinal and cardiovascular systems, and hallmarks of the disease include painful ulcers in the mouth and on the genitals. Behçet's disease most commonly affects men and women in their twenties, thirties and forties, and it is typically more severe in men. Behçet's disease is also referred to as the "Silk Road" disease because it is most common among people from countries along this ancient trade route, including Turkey, eastern Mediterranean countries, Japan and Korea. An estimated 5,000 to 15,000 patients in the United States have Behçet's disease.
Non-infectious uveitis, or inflammation of the intraocular tissues of the eye, of Behçet's disease is one of the most severe forms of uveitis and affects approximately half of the patients with Behçet's disease. Unlike many forms of chronic uveitis, Behçet's uveitis is characterized by recurrent acute attacks or exacerbations. Without immediate treatment, major exacerbations of Behçet's uveitis may lead to retinal detachment, vitreous hemorrhage, glaucoma and eventual blindness. Symptoms include the accumulation of vitreous haze which can block eyesight or the loss of visual acuity and can manifest differently from patient to patient. For example, patients may go from 20/20 eyesight to loss of vision during the course of an exacerbation. Available treatments for Behçet's uveitis are limited to corticosteroids and off-label use of immunosuppressive drugs, which can have significant side effects especially when used on a chronic basis.
About XOMA Corporation
XOMA combines a portfolio of innovative therapeutic antibodies, both in late-stage clinical development and in preclinical research, with its recently launched commercial operations. XOMA focuses its antibody research and development on allosteric modulation, which offers opportunities for new classes of therapeutic antibodies to treat a wide range of human diseases. XOMA is developing its lead product gevokizumab (IL-1 beta modulating antibody) with Servier through a global Phase 3 program in non-infectious uveitis and ongoing proof-of-concept studies in other IL-1-mediated diseases. XOMA reaffirmed it expects to have top-line data from its ongoing proof-of-concept study of gevokizumab to treat moderate to severe acne vulgaris at year end 2012. XOMA's scientific research also produced the XMet program, which consists of three classes of preclinical antibodies, including Selective Insulin Receptor Modulators (SIRMs) that could have a major effect on the treatment of diabetes. In order to retain significant value from its scientific discoveries, XOMA initiated commercial operations in January 2012 through the licensing of U.S. commercial rights to Servier's ACEON® (perindopril erbumine) and a patent-protected portfolio of product candidates.
More detailed information can be found at www.xoma.com
About Servier
Servier is a privately-run French research-based pharmaceutical company. Current therapeutic domains for Servier medicines are cardiovascular, metabolic, neurological, psychiatric and bone and joint diseases, as well as oncology. Servier is established in 140 countries worldwide with over 20,000 employees and a 2011 turnover of €3.9 billion. Servier invests 25% of its turnover in R&D.
09/26/2012-A story in today's Claremont Courier about KGI student Stacy Crawford and the team that successfully wrote an orphan drug-designation application for the use of a drug called pentoxifylline for the treatment of Behçet's disease highlights some of the great work being done by KGI students and the Center for Rare Disease Therapies. On behalf of Behcet's patients, thank you! Here's the story-
09/26/2012-
KGI student finds help, and helps others with rare disease
A little over a decade ago, 28-year-old Stacy Crawford was diagnosed with Behcet’s disease, a rare autoimmune disorder often characterized by ulcers and inflammation in painful, spontaneous flare-ups. She spent 10 days in the hospital with her initial outbreak as doctors struggled to diagnose her. Feeling alone in her struggle, Ms. Crawford vowed to one day help others facing similar strife.
With her leadership in a recent research project at Claremont’s Keck Graduate Institute of Applied Life Science (KGI), the Master of Science student has found her moment.
Through KGI’s Center for Rare Disease Therapies (CRDT), Ms. Crawford and classmates have found an alternative drug, pentoxifylline, to help treat patients with Behcet’s disease. After filing an application for the drug last spring, the KGI colleagues have received notice from at least one pharmaceutical company interested in marketing the drug for Behcet’s patients.
“I have always wanted to reach out, but didn’t know how,” Ms. Crawford said. Her group’s research, supported by the American Behcet’s Disease Association, has provided her with an outlet. “I didn’t think I would ever be able to have this opportunity.”
Their research began last fall as part of a class offered by Professor and Director of CRDT Ian Phillips. The semester-long class teaches students how to write and submit applications for orphan drugs—medications used to treat rare medical conditions—to various pharmaceutical companies. In 1983, President Reagan signed an act that would provide incentives for companies to commercialize these orphan drugs, and Mr. Phillips’ class and the CRDT furthers that mission: making medication for rare diseases more readily available.
“There are a lot of perfectly safe, unused drugs out there that could be used for treating rare diseases,” Mr. Phillips said. “[Pentoxifylline] is a very nice discovery by Stacy and her colleagues. It has been used in the past without any toxicology problems and can be adapted to Behcet’s patients.”
“Of course, it also helps to have an authority on Behcet’s,” he added.
Knowing the harsh reactions to many of the drugs used to treat Behcet’s, Ms. Crawford was eager to explore and advocate medication options that presented fewer side effects as a part of her class research.
“The first line of therapy [for Behcet’s] is usually steroids, which you can’t take long-term and have pretty bad side effects,” she said. “Finding a drug with minimum side effects was definitely important.”
Ms. Crawford came across pentoxifylline while browsing the website for the American Behcet’s Disease Association. Though pentoxifylline is typically used as a generic anti-inflammatory medication, case studies have shown its success in treating Behcet’s, according to Ms. Crawford.
“We looked at many other drugs, but pentoxifylline seemed to be the best,” she said. “It stood out because the standard mechanisms were so different than your typical steroid. [Pentoxifylline] had the least amount of side effects.”
With the right drug identified, Ms. Crawford and her classmates set to work preparing an application for submission to pharmaceutical companies. The workload, between the research and perfecting the application, proved to be more than the team had planned, according to Ms. Crawford. At the end of the semester, MC and her teammates did not want to put the unfinished work aside, so they applied for an independent study course to continue the project the following spring.
The extra effort was worth it and Ms. Crawford is living proof of the project’s success. Ms. Crawford has been taking the drug for the past 3 months and has yet to see a flare up, which for her usually occur every 6 weeks.
“It’s like a miracle so far,” she said.
In addition to finding a new and improved way of dealing with her own Behcet’s, Ms. Crawford feels she is finally finding her outlet to helping others. Once seemingly alone in dealing with her disease, she is now receiving an abundance of correspondence from other people with Behcet’s.
“Those with Behcet’s are few and far between. A lot of the times you feel like you are alone, like no one is reaching out to help you,” Ms. Crawford said. “Now I have the chance to reach out and help others.”
—Beth Hartnett
news@claremont-courier.com
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 Actof 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. 06/05/2012- 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.
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
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 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.)
