Professional Organizations

We link to a variety of professional organizations, along with organizations made up primarily of patients, each of which offers value through its home website.

CANCER

Association of Cancer Online Resources (ACOR)
The ACOR creates and maintains cancer-related mailing lists and Web-based resources to keep subscribers up-to-date and educated about the newest information available about their specific form of cancer. With 132 mailing lists from which to choose, cancer patients and their caregivers are bound to find at least one to aid their search for current, credible news and information. The organization also hosts numerous cancer-related and disease-specific websites, and offers information on common and uncommon cancers, treatment options, and clinical trials, and more.
www.acor.org/index.html

National Alliance for Breast Cancer Organizations
This New York City-based organization is the “leading nonprofit information and education resource on breast cancer in the US.” With special sections geared specifically towards those with recurrent breast cancer, the newly diagnosed, and those who think they may have this disease, this site takes the patient through every phase of breast cancer survivorship, offering advice and information catering to specific patient concerns associated with each. Click on “Top Resources” to find an inclusive list of books, organizations, websites, brochures, and videos useful for anyone seeking information on the disease. NABCO News, the organization’s quarterly newsletter, is also available here.
www.nabco.org

CARDIOLOGY

Congenital Heart Information Network
Via its website, the Congenital Heart Information Network (CHIN) hosts online chat sessions, and gathers information about cardiology services and various links for families and professionals. A carefully selected list of recommended reading is also featured here. The “Resource Room” includes articles and educational materials written and reviewed by health professionals. The CHIN meets online and in person, through local support groups and special events.
www.tchin.org/index.htm

Mended Hearts
Affiliated with the American Heart Association, Mended Hearts “has been offering the gift of hope to heart disease patients, their families, and caregivers for more than 50 years.” Four hundred sixty hospitals and rehabilitation clinics work with Mended Hearts to offer services to heart patients through visiting programs, support group meetings, and educational forums. Access educational resources, find out how to become a member, find information on upcoming events organized by Mended Hearts, and learn about volunteer opportunities and other ways to assist Mended Hearts in its mission to educate and empower patients with cardiovascular problems, by visiting the URL below.
www.mendedhearts.org

DIABETES/ENDOCRINOLOGY

The Cushings Support and Research Foundation (CSRF)
To increase public awareness of this often overlooked and underdiagnosed condition, the CSRF offers a fact sheet taking the patient through an explanation of symptoms, diagnosis, and treatment, and also offers information on current research and other helpful resources. Choose from a list of physician-authored articles covering pituitary disease, radiosurgery, growth hormone deficiency, and how to deal with your doctor; the CSRF also lists doctors who can help Cushing’s patients and volunteers to contact for guidance and support.
www.csrf.net

The MAGIC Foundation
The MAGIC Foundation covers more than 100 different types of growth disorders, includes 11 specific divisions, and provides educational and support services worldwide. Here, visitors can access disease-specific information, information on MAGIC’s Annual National Convention, and webcasts on topics of interests to patients and caregivers. Join MAGIC’s listserv to communicate with other individuals and families dealing with similar conditions and situations; medical professionals do not moderate the listserve, so no medical advice can be provided. Special resources for children include the MAGIC Maniacs Kids Newsletter, the Kids Growth Hormone Deficiency Homepage, and a Pen Pal program.
www.magicfoundation.org

MEN’S HEALTH

Men’s Health Network
This nonprofit educational organization is made up of healthcare professionals dedicated to “improving the health and well-being of men, boys, and families.” Established more than a decade ago, the MHN works to reduce premature male mortality, violence, and addiction among men, energize government involvement in men’s health activities, and encourage women to get involved with men’s health initiatives, through its website, initiatives, programs, and events. The online library includes information on men’s health issues garnered from government and private sector publications, reports, and analyses. Visitors can also register to receive the weekly newsletter, Healthy E-Male, link to other helpful online resources for men’s health, and find out how to get involved in the programs hosted by the MHN.
www.menshealthnetwork.org

National Prostate Cancer Coalition
The National Prostate Cancer Coalition has been providing education and support to prostate cancer survivors and their families for more than eight years. Visit the Coalition’s website to learn more about its advocacy initiatives and outreach and awareness programs. You can also subscribe to Aware, the Coalition’s twice-weekly newsletter, read basic information about prostate cancer, find out your risk of developing this disease, learn about screening, and explore prostate cancer facts and figures in the “Education” section. Through award-winning publicity campaigns such as “Do it for Dad!,” the NPCC seeks to publicize the importance of early detection in high-risk groups.
www.4npcc.org

MENTAL HEALTH

Anxiety Disorders Association of America (ADAA)
Read about the various anxiety disorders, their causes, and their treatments on the ADAA website. The “How to Get Help” section allows you to search for a doctor near you, while the “Self Help Tools” section offers what one would expect: a compilation of self-help support groups organized geographically for easy retrieval, as well as an online anxiety screening test. Browse the ADAA online bookstore offering titles of interest to those suffering from anxiety disorders, or make a donation to support the ADAA’s projects and research. Also helpful are a clinical trials listing, a fast facts and media section, and an advocacy action center that quickly links you to your local representatives and important legislation, votes, issues, and the media as they relate to mental health.
www.adaa.org

Depression-Bipolar Support Alliance (DBSA)
Patients looking for support groups for depression and bipolar disorder might find this site particularly useful; visitors need only click their state on the map provided in the “Support Groups and Chapters” section to find a complete listing of DBSA chapters in their area. This site provides many other resources for depression and bipolar disorder—visitors can take a screening test for bipolar disorder, as well as check the latest headlines and news stories relating to depression, bipolar disorder, and other mental health issues. A new publication for children called The Storm in My Brain is also available through the website; patients can print it out in .PDF format or visit the DBSA online bookstore to order a free copy.
www.dbsalliance.org

NEUROLOGY

Charcot-Marie-Tooth Association (CMTA)
Through its website and fundraising efforts, the CMTA aims to “educate, fund research, and promote public awareness of CMT, the most commonly inherited peripheral neuropathy.” CMT is a complex and often misunderstood disease; the CMTA promotes research “that would lead to better diagnosis, treatments, and eventually a cure for [CMT].” Visit the CMTA’s website to access information about CMT, link to support groups and resources, and learn how you can assist the organization in its efforts. Be sure to read the medical alert to find out about drugs that can be harmful to CMT patients and browse the “Ask the Experts” section to find answers to patient questions, grouped alphabetically by subject.
www.charcot-marie-tooth.org/site/content

WE MOVE
WE MOVE is dedicated to “educating and informing patients, professionals, and the public about the latest clinical advances in the management and treatment of neurologic movement disorders.” Visitors can subscribe to “Stay Connected,” a new patient-oriented e-news service that delivers timely information about the diagnosis and treatment of dystonia, essential tremor, Parkinson’s disease, and other movement disorders. Participate in chats and discussions on such topics as corticobasal degeneration, dystonia, and essential tremor, browse WE MOVE’s international guide to movement disorder patient advocacy groups and foundations, view the patient and caregiver meeting calendar, search the glossary, and link to other pertinent resources.
www.wemove.org

PEDIATRICS

About Our Kids
About Our Kids, from the NYU Child Study Center, is a one-stop website for all parents concerned about their child’s development and behavior. Parents searching for sensible information on childhood behavior, development, emotions, school-related issues, and social skills will find an exhaustive list of articles covering particular issues common to many families and useful advice on how to handle them. About Our Kids also offers “News and Views,” “CSC Highlights,” which highlights events, people, and activities from the NYU Child Study Center, CSC Letter, a newsletter, published five times a year, which covers topics related to childhood development, academic concerns, and emotional and psychological issues, clinical study information, suggested reading on an array of topics, and information on the programs available through the CSC.
www.aboutourkids.org

STARBRIGHT Foundation
Through the efforts and leadership of such well-known figures as Steven Spielberg and General Norman Schwarzkopf, the STARBRIGHT Foundation develops programs “that empower seriously ill children to combat the medical and emotional challenges they face on a daily basis.” Children coping with serious illness can link to STARBRIGHT World, an online community where kids and teens can connect and offer support, friendship, and advice to others facing the same difficulties. Featuring the voices of 11 top celebrities, “Quest for the Code” is a CD-ROM game, available free of charge, designed to help kids learn how to best manage their asthma. Other programs include “STARBRIGHT Hospital Pals,” an interactive educational intervention for children undergoing radiation therapy for cancer and featuring Barney the dinosaur, STARBRIGHT “Videos With Attitude,” geared towards adolescents and covering such topics as school re-entry after serious illness, and more.
www.starbright.org

RHEUMATOLOGY

Chronic Fatigue and Immune Dysfunction Syndrome Association of America
The “leading charitable organization dedicated to conquering chronic fatigue and immune dysfunction syndrome (CFIDS),” the CFIDS Association “works to accelerate the pace of CFIDS research, achieve public policy victories for people with CFIDS, and focus mainstream attention on this serious public health concern.” Access information on conferences and meetings of interest, learn about patient advocacy initiatives, browse a recommended reading list, and learn more about the legal and financial issues patients with CFIDS face via this helpful website.
www.cfids.org

Sjögren's Syndrome Foundation
The Sjögren’s Syndrome Foundation (SSF) website offers patients information on this autoimmune disorder, its diagnosis, and its treatments, as well as information on the Foundation and its advocacy initiatives. Purchase products online from the SSF store, where 100% of the proceeds of sales are applied to SSF programs and initiatives. Register to attend upcoming meetings and events “designed to help patients and their families coping with Sjögren’s syndrome learn the latest about the disease, treatments, and coping strategies,” make a donation, or register for membership to get involved with the Foundation’s efforts to provide education and assistance to patients, families, and caregivers dealing with Sjögren’s syndrome.
www.sjogrens.org