Welcome to the ABDA's online community for
Behcet's patients, caregivers, and loved ones.
We're glad you stopped by!
Thank you for your memberships, donations and participation in ABDA events!
Through our collaborative fundraising efforts, the ABDA has donated $10,000 to
the Center for Biomarker Research at Keck Graduate Institute (KGI)
to further fund biomarker research for Behcet's Disease.
This donation represents the first grant award in the history of the ABDA.
We are grateful for your efforts!
The ABDA's 2013 WALK FOR BEHCET'S DISEASE AND UVEITIS-CALIFORNIA
was a great success!
The Walk took place on Saturday, September 14, 2013
at Cesar Chavez State Park in Berkeley, CA,
Donations continue to be accepted at: http://www.behcets.com/2013WalkCA
We thank XOMA Corporation and Stegmeier LLC for sponsoring this event.
The ABDA Annual Membership Meeting took place
on Friday, September 13, 2013
immediately following the Panel Discussion at XOMA Headquarters
the day before the 2013 Walk for Behcet's Disease and Uveitis-California.
A summary of the meeting will follow shortly.
The Center for Biomarker Research continues to make strides through the study
Identification and Characterization of Rare Disease Biomarkers focusing on Behcet's Disease.
The ABDA serves as the firewall for patient confidentiality. To read an overview CLICK HERE
Do you have eye inflammation or have you been diagnosed with uveitis?
Are you currently on medication to treat your eye inflammation?
A research study is being conducted in the United States to evaluate
an investigational medication for the treatment of non-infectious uveitis.
To learn more, please call 800- 873-0597 or visit http://www.eyeguard-study.com
For the latest news, please scroll down to
News in the Behcet's Community on this page.
ONGOING RARE DISEASE STUDY
If interested in participating in the IDENTIFICATION AND CHARACTERIZATION OF DIAGNOSTIC RARE DISEASE BIOMARKERS STUDY, please review the Consent Form
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 firstname.lastname@example.org 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.
Thank you for your interest and participation!
Download Consent Form by Clicking HERE.
Living with a rare disease can be an isolating experience. RareConnect was created by EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders) to provide a safe, moderated space, where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources. Posts are translated in various languages.
Visit http://www. rareconnect.org to register and connect with others globally. Behcet's is listed under Behcet's Syndrome. Connect now-
News in the Behcet's Community
December 16, 2013-
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Genzyme and NORD Establish Patient Assistance Program to Help Undiagnosed Patients with Rare Diseases
FOR IMMEDIATE RELEASE
"While progress in scientific research has been very promising in recent years, millions of Americans who have rare diseases go for five years or longer without an accurate diagnosis," said NORD President and CEO Peter L. Saltonstall. "This delays treatment and creates enormous financial and emotional stress for patients and their families."
Genzyme has been a longstanding partner of NORD, and the creation of the Genzyme/NORD NIH Undiagnosed Diseases Fund is another way for Genzyme to support the rare disease community, company officials noted. The new fund is made possible in part by a team of Genzyme employees who run the Boston Marathon to raise funds for NORD services on behalf of all patients and families affected by rare diseases. Since 2008, members of the Genzyme Running Team have been paired with rare disease patient partners, and devote months before the Boston Marathon to training, raising awareness and fundraising.
"This initiative highlights the unmet need that still exists in helping patients with rare diseases find an accurate diagnosis," said David Meeker, MD, President and CEO, Genzyme. "We are proud of the work of the Genzyme Running Team and are excited that their fundraising efforts will be focused on a program with such immediate and direct benefit for patients."
In 2014, the NIH Undiagnosed Diseases Program will expand to include a network of major academic medical centers across the U.S. The Genzyme/NORD NIH Undiagnosed Diseases Fund will support testing for patients applying to all clinical sites.
"We are grateful for the interest of Genzyme, NORD and the Genzyme Running Team in supporting the Undiagnosed Diseases Network," said William Gahl, MD, Director of the NIH Undiagnosed Diseases Program. "The UDP serves individuals and families who are desperately seeking a diagnosis after having exhausted all other avenues. We look forward to the expansion of the program in 2014, and we feel that support for this standard testing will be an important source of assistance for patients and their families."
About the NIH Undiagnosed Diseases Program (UDP)
Established in 2008, the NIH UDP is the primary national resource for patients and their physicians who have exhausted other alternatives in seeking a diagnosis. Those accepted into the program go to the NIH Clinical Center in Bethesda, MD, where a multidisciplinary team of medical experts seeks to unravel the mystery and determine a diagnosis.
Patients applying for admission to UDP provide their medical history and medical test results. A team of NIH physicians then evaluates the medical tests for diagnostic clues. Due to limited resources, NIH only admits patients physicians think they can help, and only those patients with a baseline of preliminary medical tests are eligible for consideration into the program.
About the National Organization for Rare Disorders (NORD)
NORD is a nonprofit organization established in 1983 to represent all individuals and families affected by rare diseases. It provides advocacy, education, support for research, and patient assistance programs to improve the lives of the 30 million Americans living with rare diseases.
About Genzyme, a Sanofi Company
Genzyme has pioneered the development and delivery of transformative therapies for patients affected by rare and debilitating diseases for over 30 years. With a focus on rare diseases and multiple sclerosis, it is dedicated to making a positive impact on the lives of the patients and families it serves.
Sanofi, a global and diversified healthcare leader, discovers, develops and distributes therapeutic solutions focused on patients' needs. Sanofi has core strengths in the field of healthcare with seven growth platforms: diabetes solutions, human vaccines, innovative drugs, consumer healthcare, emerging markets, animal health and the new Genzyme.
November 15, 2013-
Six Lectures on Vasculitis
Saturday November 16, 2013 Registration is FREE for VF Canada members.
Non-members can attend by becoming new members now, with a $20 or $50 membership. To become a new member go to the Vasculitis Foundation Canada home page and click the membership tab on the left side.
To attend the lectures only, as a non-member, we have limited seating only but you may register with a minimum $20 donation.
Register now using the Participant Registration tab on the left, in the Visitors Box.
For complete programme details for this full day event please click on the Six Lectures on Vasculitis tab, in the Information Box on the left.
We look forward to seeing on Saturday November 16, 2013!
October 18, 2013-
We are proud to welcome Calvin Brown, MD, to our ABDA Medical Advisory Board!
Dr. Brown is Professor of Medicine in the Division of Rheumatology of The Feinberg School of Medicine of Northwestern University. He also serves as director of the Rheumatology training program there. Dr. Brown is a member of a number of professional organizations, including the American College of Rheumatology, the American College of Physicians, and is past president of the Chicago Rheumatisim Society. His research has been published in such journals as Arthritis and Rheumatisim and The Journal of Rheumatology. He is author of several textbook chapters dealing with arthritis and allied conditions. His areas of focus include education in the rheumatic diseases, sports medicine, and disability evaluation. Dr. Brown received his medical degree from Wayne State University. He completed his internship and residency at Northwestern Memorial Hospital. He also completed fellowships in Rheumatology at the University of Michigan and in orthopaedics at Rush University Medical Center.
August 31, 2013- Johnson & Johnson To Add Warnings To Extra Strength Tylenol-
In order for a sponsor to obtain orphan designation for a drug or biological product, an application must be submitted to OOPD, and the designation approved. The approval of an application for orphan designation is based upon the information submitted by the sponsor. A drug that has obtained orphan designation is said to have "orphan status." Each designation request must stand on its own merit. Sponsors requesting designation of the same drug for the same indication as a previously designated product must submit their own data in support of their designation request. The approval of an orphan designation request does not alter the standard regulatory requirements and process for obtaining marketing approval. Safety and efficacy of a compound must be established through adequate and well-controlled studies.
Bloomberg News (8/29, Edney) reports that starting in October, Johnson & Johnson will start warning consumers of the risk of fatal liver failure when taking higher doses of acetaminophen, through a red warning on caps of Extra Strength Tylenol. Two years ago, the FDA cut the amount of acetaminophen prescription products could contain to 325 milligrams per pill.
The AP (8/29) reports that Dr. Edwin Kuffner, vice president of McNeil Consumer Healthcare, indicated, “We’re always looking for ways to better communicate information to patients and consumers.” The company has also faced over 85 lawsuits and Federal government pressure for the warnings. The FDA and Centers for Disease Control and Prevention note that at least 500 people annually are killed by acetaminophen overdoses, and 55,000 to 80,000 go to the emergency room. The ingredient is believed to be safe in normal dosages. Dr. William Lee of the UT Southwestern Medical Center feels McNeil helped contribute to the overdose problem by touting Tylenol as “the safest kind of pain reliever.”
CNN (8/30) reports that acetaminophen overdose is one of the most common causes of poisoning in the world.
Fierce Pharma (8/29, Staton) reports that the caps will note Extra Strength Tylenol “contains acetaminophen” and “always read the label.” Over the next few months, the warnings will be added to other Tylenol products. In 2011, Johnson & Johnson reduced the maximum daily dose guidelines from eight pills to six.
June 15, 2013-Understanding More About Orphan Drug Designation-The Orphan Drug Act (ODA) provides for granting special status to a product to treat a rare disease or condition upon request of a sponsor. The combination of the product to treat the rare disease or condition must meet certain criteria. This status is referred to as orphan designation. Orphan designation qualifies the sponsor of the product for the tax credit and marketing incentives of the ODA. A marketing application for a prescription drug product that has been designated as a drug for a rare disease or condition is not subject to a prescription drug user fee unless the application includes an indication for other than a rare disease or condition.
To read more, visit:
The list in the Searchable database for Orphan Designated and or Approved Products will be updated monthly.
June 10, 2013- You can become a member of a free moderated support group for Behcet's patients by visiting: http://health.groups.yahoo.com/group/Behcet-support
May 1, 2013-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 or to obtain books and information about BD, contact Joanne at email@example.com
April 29, 2013-16th International Conference on Behçet's Disease
Where: Paris, France
When: from 18 to 20 September 2014
18-20 September 2014.
As the main event in the world of Behçet’s Disease, the Conference will provide high quality contributions on a wide range of topics including clinical innovations, genetics and basic science. Update on new therapeutic strategies will be presented and challenging issues will be discussed. We have planned to invite distinguished lecturers notably in the field of innate immunity.
To make this Conference the most interactive, we will organize breakfast meetings that will be an opportunity for sharing experiences with experts. As the last Conference in Paris was held in 1993, we are honoured to welcome you again in the “City of Light” and we wish your stay being instructive and enjoyable.
April 15, 2013- Clinical Trials Now Recruiting Behcets Patients-
1-Information on ongoing gevokizumab clinical studies can be found at: www.clinicaltrials.gov. or by visiting: http://www.clinicaltrials.gov/ct2/show/NCT01747538?term=gevokizumab&rank=3
2.NIH CLINICAL TRIAL WITH ANAKINRA- For more information, please visit:
3.NIH BEHCET'S NATURAL HISTORY STUDY-For more information, please visit:
4.CLINICAL TRIAL AT THE BEHCET’S SYNDROME CENTER- Dr. Yusuf Yazici is recruiting female patients with Behcet's Disease for a clinical trial taking place at the Behcet's Syndrome Center in NYC. http://www.clinicaltrials.gov/ct2/show/NCT01693640?term=abatacept+AN
April 12, 2013- Free Webinar-
Understanding Essential Health Benefits
https://globalgenes.org/essential-health-benefits-webinar/Do you know how the recently passed Affordable Care Act (often referred to as Obamacare) may affect you and your family? The Global Gene Project will explain the changes that are about to take effect, and more importantly, how these changes will affect our entire rare disease community. Click on the link for information.
February 19, 2013-New findings on the genetic risks of Behcet's Disease have been identified by a University of Michigan-led international team of researchers. In one of the most extensive analysis of Behcet's Disease, the lead author, Amr Sawalha, MD, Associate Professor of Internal Medicine in the Division of Rheumatology at U-M Medical School in Ann Arbor, Michigan, explains how researchers have studied the phenomenon of why certain forms of HLA are associated with autoimmune inflammatory disorders. One of the major genetic risk factors of Behcet's Disease is believed to be a specific form of chromosome 6 in the HLA region (an inherited group of genes known as human leukocyte antigen). Contrary to the belief that genetic risk is strongly tied to a form of the gene HLA-B (HLA-B*51), the new study shows that there are at least four independent genetic risk regions within the HLA linked to Behcet's Disease. The study shows an extensive way to look at the HLA region that can also be applied to other diseases, opening doors to further developments in one of the most complicated and long studied areas of the human genome.
January 17, 2013-
Celgene Drug Gets FDA Orphan Status for Behçet’s Disease
By Jeremy R. Cooke
Jan. 17 (Bloomberg) -- Celgene’s apremilast received the FDA’s orphan drug designation for treatment of Behçet’s disease, a chronic inflammation disorder that’s rare in the U.S.
* NOTE: Apremilast being studied for use in treating psoriasis, psoriatic arthritis and other chronic inflammatory diseases. To learn more about Celgene's Apremilast and read the press release, click on the FDA link: http://j.mp/XGVOmo
XOMA Announces Servier Has Initiated Phase 3 Gevokizumab Trial in Patients With Behcet's Uveitis-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.
September 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 randomizeddouble-masked, placebo-controlled study of the efficacy 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.
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.
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
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
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. More information at www.servier.com
September 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 firstname.lastname@example.org
09/01/2012-PODCAST- 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. Click here to listen to the PodCast.
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