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Other Organizations Other organizations can be extremely helpful to those with Churg Strauss Syndrome. Some are “umbrella” organizations providing information and support for groups of diseases with common features, while other groups focus on diseases similar to CSS. Many of these groups are identified by acronyms while others are subgroups of other organizations, making this all a bit difficult to sort out. The Office of Rare Diseases (ORD) is a government agency established in 1993 and is part of the National Institute of Health (NIH). ORD coordinates and stimulates research on rare diseases, including Churg Strauss Syndrome. Their website has information about research and clinical trials, scientific conferences, various rare diseases and their support groups, and information about resources to help with patient travel expenses. In addition, ORD helps to empower patient advocacy groups to better meet the needs of their members. Their website is: (link) The National Organization for Rare Disorders (NORD) is somewhat similar to ORD, but it is a non profit, non-government agency and is a coalition of voluntary health organizations dedicated to serving the needs of patients with rare diseases, their families, and assisting the organizations that serve them. They sometimes work in conjunction with ORD. For example, the NORD Family Conference being held in Minnesota in October is being co-sponsored by ORD. You can read more about this conference on either website. The NORD website contains much information about every aspect of rare diseases as well as helpful links to other sites. Their website (link) The Rare Disease Clinical Research Network (RDCRN) was established by the National Institute of Health (NIH) in November, 2003 with a $51 million grant for funding several Rare Disease Clinical Research Centers (RDCRCs) and a Data and Technology Coordinating Center (DTCC). One of the research centers funded is the Vasculitis Clinical Research Consortium (VCRC). The VCRC was awarded a grant of 6.25 million dollars to study vasculitic diseases including Churg Strauss Syndrome. The VCRC website has information about vasculitis in general as well as information about Churg Strauss Syndrome in particular. Its focus will be to foster and facilitate clinical research in the inflammatory vasculitides to gain a better understanding of these rare diseases. The VCRC believes that patient support groups are important partners in clinical research and has worked with vasculitis patient organizations since its inception. One very important component of the VCRC website is a patient registry which will aid in research of our rare disease. The registry is completely voluntary and confidential. The Churg Strauss Syndrome Association has provided this link directly to the registry to make it easy to register. Only through research will we be able to learn more about CSS, find better treatment and possibly, someday, find a cure. According to the The American Autoimmune Related Diseases Association’s http://www.aarda.org/ mission statement"... AARDA sponsors physician's conferences, research, legislative advocacy and a national awareness campaign to bring a national focus to autoimmunity.” They have a wealth of information about autoimmune diseases, although as yet there is not a direct link to information about Churg Strauss disease. Dr. Gary Hoffman, who is on our Medical Advisory Board, is a Director of the Cleveland Clinic Center for Vasculitis ( link) http://www.clevelandclinic.org/arthritis/vasculitis/default.htm. This web resource has a wealth of information about vasculitis, in addition to information about Churg Strauss specifically. Information about Churg Strauss Syndrome can be found under the link : “What We Treat”. There is a helpful diagram showing an inflamed blood vessel as well as easy to understand information about our disease. There is a link to research being conducted at the Center. In addition, information about the International Network for the Study of Systemic Vasculitides (INSSYS), which Dr. Hoffman founded, can be found under the link “ Meet the Team Leaders”. The Johns Hopkins Vasculitis Center, where Dr. John Stone is the Director and who also serves on our Medical Advisory Board, has an excellent website http://vasculitis.med.jhu.edu/ with information about all kinds of vasculitic diseases, a great glossary of terms, and much information about CSS ( click on the “Types of Vasculitis” link at the top of the page). The site contains some photographs showing physical manifestations of the disease. There is also a link to research and clinical trials being conducted at the Center.
The Cincinnati Children’s Hospital Medical Center has an
excellent clinic for eosinophilic disorders. Their website has information
about eosinophilic gastroenteritis and Hypereosinophilic Syndrome
which may be helpful for patients with CSS. They have a good question
and answer section as well as information about research. The above list is comprised only of the medical and research facilities who have web information about Churg Strauss, vasculitis or related conditions.There are, of course, many respected medical facilities that treat the disease are are not yet listed here.
Other Patient Groups Churg Strauss International Support Group- http://www.churg-strauss.com/ Arbeitskreis Vaskulitis- A German Support Group for people with vasculitis. English translation http://www.vaskulitis.org/ The Vasculitis Foundation, formerly the Wegener’s Granulomatosis Association, has evolved into an umbrella organization for all fifteen of the vasculitic diseases, including Churg Strauss Syndrome. The VF was founded in 1986 and now has over 4,000 members worldwide. The VF, the only vasculitis patient support group in the world, provides many services to advance the cause of vasculitis and to support vasculitis patients everywhere. The VF promotes and funds research, and provides a bimonthly newsletter, up to date information on its’ website, patient and physician information packets, an 800 telephone number, support groups, and patient symposiums. The VF needs your help in continuing this good work and Churg Strauss Syndrome patients are strongly urged to become members of the Vasculitis Foundation. Polyarteritis Nodosa, another disease related to CSS, also has a good website at http://www.pansupport.org/. The website was founded in 1999 by Ed Becker and now has close to 400 members members. It has helpful links to doctors who specialize in vasculitic diseases as well as a live chat feature. The Takayasu's Arteritis Research Association (TARA), is a non-profit 501(c)(3) voluntary health organization established in the United States in 1999 by John Booros to seek out and advocate for people who have Takayasu's Arteritis (TA). The goal of TARA is to promote public awareness about this disease by providing current information to patients, families, friends and medical professionals and helping to facilitate avenues of funding for research on TA, seeking new ways of early detection of the disease, better treatments of TA and, possibly finding a cure for Takayasu's Arteritis (TA). Their website is: http://www.takayasus.org/. Bruce MacDonald is known to everyone on the CSSISG by the name of blader49456@yahoo.com. He tirelessly tracks down all research pertaining to Wegener’s and shares whatever is relevant with the CSSISG subscribers. His webpage can be found at: http://www.wegenersgranulomatosis.net/
Medications Prednisone The Johns Hopkins Vasculitis Center has good information about
prednisone along with some photographs showing side effects. MedlinePlus, which is a service of the U.S. National Library of
Medicine and the National Institutes of health, has good information
about this frequently prescribed drug. Medicinenet has some information about prednisone. http://www.medicinenet.com/prednisone/article.htm The Lupus Canada website has easy to understand information about
prednisone There is a whole book called Coping With Prednisone: It May Work Miracles But How Do You Handle the Side Effects (* And Other Cortisone-Related Medicines) by Eugenia Zukerman and Julie Ingelfinger. It can be ordered online from Amazon.com or Barnes and Noble. Cytoxan Again, the Johns Hopkins Vasculitis Center has great information
about this drug. WebMDHealth article on Cytoxan therapy for Multiple Sclerosis: The American College of Rheumatology has information about Cytoxan. Imuran or Azathioprine The American College of Rheumatology has good information about
this drug. Although Jackson Gastroenterology has information about using Imuran
for GI problems some of the info pertains to CSS. WebMDHealth talks about using Imuran for treating Multiple Sclerosis The Yale New Haven Health website Leukotriene Receptor Antagonists- zafirlukast (Accolate®) and montelukast (Singulair® U.S. Food and Drug Administration Consumer Drug Information Netdoctor co.uk FDA Talk Paper for Health Advisory for New Asthma Drug CLICK HERE
Descriptions of CSS and Vasculitis Definition for a diagnosis of Churg-Strauss Syndrome from the U.S.
Army Medical Department Article from medicinenet.com Article about Vasculitis in Arthritis Research Campaign website
from the UK. Orphanet description of Churg-Strauss Information on TIAs ( mini strokes) which may be caused by vasculitis
by MedlinePlus.
Disability programs Disability programs by federal government National Organization of Social Security Claimants' Representatives Helpful hints about the application process
Other Financial Help Information about financial assistance for medications from NeedyMeds.com Website of the National Patient Air Transport Helpline NIH Office of Rare Diseases website with many links to organizations
that provide help to needy patients. The A.C.C.E.S.S.® Program - Helping Families Cope Although the National Institutes of Health (NIH) is not authorized
to provide routine medical assistance or treatment funds, this website
provides links to organizations that may provide aid for medical
treatment. Brief Biographies of the Doctors Who Defined Churg-Strauss Syndrome Dr. Lotte Strauss Dr Jacob Churg
Medical Tests MedlinePlus WBC count White blood cell count and differential Anca Associated Small Vessel Vasculitis, American Academy of Family
Physicians Complete Blood Count and what the counts mean. MedlinePlus Urinalysis Urinalysis (General & Microscopic) Urinalysis AllRefer.com health Urinalysis - what do abnormal results mean? MedlinePlus ESR (sed rate) MedlinePlus C-reactive protein
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