Ovarian Cancer National Alliance
| Founded | 1997 |
|---|---|
| Focus | "To advance the interests of women with ovarian cancer" |
| Location |
|
Key people | Diane O'Connor (Board President) |
| Website | www.ovariancancer.org |
The Ovarian Cancer National Alliance is an advocacy organization for women with ovarian cancer in the United States. To advance the interests of women with ovarian cancer, the organization advocates at a national level for increases in research funding for the development of an early detection test, improved health care practices, and life-saving treatment protocols. The Ovarian Cancer National Alliance educates health care professionals and raises public awareness of the risks and symptoms of ovarian cancer. The Ovarian Cancer National Alliance is a 501 (c)(3) organization established in 1997.
History and Mission
In 1997, the leaders of ovarian cancer organizations from around the country met for the first time as the Department of Defense launched its Ovarian Cancer Research Program and the group Ovar’coming Together convened a town hall meeting. The two events inspired these leaders to form the Ovarian Cancer National Alliance to fight for the interests of women with ovarian cancer.
The five founding members of the organization are:
- CONVERSATIONS! The International Newsletter for Those Fighting Ovarian Cancer (Texas)
- The National Ovarian Cancer Coalition (Florida)
- Ovar’coming Together (Indiana)
- The Ovarian Cancer Coalition of Greater Washington (Washington, D.C.)
- SHARE: Self-Help for Women with Breast or Ovarian Cancer (New York)
The Ovarian Cancer National Alliance’s mission is to advance the interests of women with ovarian cancer. This includes:
- Advocating for increased federal funding for ovarian cancer research that will lead to an effective early detection test, better treatment, and a cure;
- Increasing awareness that early recognition of symptoms is the best way to save lives;
- Educating medical and other healthcare professionals about ovarian cancer diagnosis and the need to provide referral to gynecologic oncologists.[1]
Advocacy
The Ovarian Cancer National Alliance is the advocacy arm of the ovarian cancer movement. The Ovarian Cancer National Alliance works with federal policy makers, including the President, Congress, and federal agencies like the Food and Drug Administration (FDA) and the Centers for Medicare and Medicaid Services (CMS). The Ovarian Cancer National Alliance commits its resources to be a voice for ovarian cancer survivors and to significantly reduce the number of deaths from this deadly disease by advocating at the federal level for:
- Adequate and sustained funding for ovarian cancer research and awareness programs.
- Legislation that improves quality of life and access to care for cancer patients.
Since 1997, when the Ovarian Cancer National Alliance was founded, survival rates from ovarian cancer have not significantly improved. However, the Ovarian Cancer National Alliance has worked to increase funding for ovarian cancer research, with the goal that this funding will support breakthroughs to help detect ovarian cancer early, treat it more thoroughly, and allow women with ovarian cancer to survive, and thrive.
The Ovarian Cancer National Alliance has worked to ensure that necessary treatments are covered by Medicare; that drugs and tests on the market are safe and effective; and that federal policy makers are aware of the importance of the ovarian cancer community.[2]
Advocacy Day
The Ovarian Cancer National Alliance's Annual Conference offers advocacy workshops to help train survivors, family, and friends to participate in Advocacy Day on Capitol Hill. On Advocacy Day, survivors meet one-on-one with elected officials to share their personal stories as well as ask for support on a number of federal efforts that are essential to conquering ovarian cancer.[3]
Education
Until an early detection test is developed, the best way to save lives is to educate women and their health care providers about the warning signs of ovarian cancer. Our Survivors Teaching Students: Saving Women's Lives® program brings survivors into classrooms to help tomorrow's clinicians gain a better understanding of ovarian cancer's symptoms and risk factors. The Ovarian Cancer National Alliance educates the public by hosting an Annual Conference, which offers forums and lectures with renowned clinicians and researchers. Also, the Ovarian Cancer National Alliance educates women by providing a medical resource for patients to keep track of their symptoms for easier and earlier diagnosis with the Symptom Diary App and Printable Symptom Diary.[4]
Survivors Teaching Students: Saving Women’s Lives®
Since 2002, the Ovarian Cancer National Alliance has been working to save the lives of women by helping healthcare practitioners learn to diagnose ovarian cancer earlier.
Through the Ovarian Cancer National Alliance’s innovative educational program, Survivors Teaching Students: Saving Women’s Lives®, future healthcare professionals — physicians, nurse practitioners, nurses and physician assistants — increase their understanding of ovarian cancer symptoms and risk factors so that they will be able to diagnose the disease when it is in its earlier, most treatable stages.
Survivors Teaching Students® brings ovarian cancer survivors into health professionals’ classrooms to share their stories and key information about the disease. The program is now in more than 100 of 133 accredited medical schools in the United States, as well as 45 nursing and physician assistant programs.
During each free one-hour presentation:
- Several ovarian cancer survivors, many of whom were diagnosed at an advanced stage, put a face and voice to the disease and tell their stories to illustrate the difficulty of early diagnosis and the resulting extended and recurring treatment.
- Students gain insights into listening to patient concerns and become sensitized to the psychosocial aspects of ovarian cancer as well as the need for early detection.
- Survivors and students directly interact to enhance the students’ learning.
- Students are surveyed to assess their understanding of the disease and the presentation’s value.
Betty Reiser, a long-term survivor and facilitator of the program, began the program at the University of Medicine and Dentistry of New Jersey (UMDNJ)—New Jersey Medical School in 2002.[5]
Annual Conference
OCNA’s Annual Conference offers educational opportunities about topics such as clinical trials, early detection, and treatment through various forums and lectures from renowned clinicians and researchers. Survivors and their families also can attend workshops and events on timely issues about living with ovarian cancer.[6]
Symptom Diary App and Printable Symptom Diary
The Ovarian Cancer National Alliance provides women with resources to track their symptoms for earlier diagnosis and treatment. Their free Ovarian Cancer Symptom Diary App allows women to create a personal risk profile and track symptoms using a smartphone, iPad or computer. The Alliance also offers a printable Symptom Diary, which includes Practice Guidance for health professionals.
The Symptom Diary, developed by the Ovarian Cancer National Alliance and the Gynecologic Cancer Foundation, can be used to track persistency of symptoms over time that may indicate the possibility of ovarian cancer. Completing this diary will help women document their concerns and assist their doctor in determining next steps.
The Practice Guidance outlines important steps the patient’s doctor may take to evaluate whether the symptoms may be ovarian cancer. Leaders in ovarian cancer research, diagnosis and treatment have developed these symptom management strategies based on their expertise and years of practice. The Ovarian Cancer National Alliance believes this very important information should be shared publicly to help women with ovarian cancer get diagnosed sooner.
In order to help physicians consider ovarian cancer as a potential diagnosis when evaluating women who present with certain symptoms, the guidance is based on expert opinion, and will be revised as clinical data becomes available.
Because the symptoms of ovarian cancer often mimic other conditions, they are sometimes misdiagnosed or ignored. By tracking the persistency of the symptoms, over time women will be better able to discuss their options for further diagnostics with their doctors. By using the Symptom Diary App and the Printable Symptom Diary with Practice Guidance, the Ovarian Cancer National Alliance believes that more women will be diagnosed with ovarian cancer earlier and hopes that lives can be saved.[4]
Awareness
The Ovarian Cancer National Alliance is committed to supporting grass-roots efforts to inform women about the symptoms of ovarian cancer, which include pelvic or abdominal pain, bloating, urinary symptoms (frequency and urgency), and difficulty eating or feeling full quickly. The Ovarian Cancer National Alliance works nationally with Partner Members and sponsors to communicate its message through local and national campaigns and events. The Annual National Conference and Women Chef's Gala in Washington, DC, raise both funds and awareness.[7]
The Ovarian Cancer National Alliance also has put out Public Service Announcements with Jack LaLanne and Kathy Bates to promote ovarian cancer awareness.[8]
Partner Member Program
The Ovarian Cancer National Alliance offers a national identity and national voice for over 60 Partner Members representing 29 states and the District of Columbia. Partner Members help the Ovarian Cancer National Alliance work to expand and enhance research funding, provide education, and increase awareness about ovarian cancer.[9]
Annual Conference
The Ovarian Cancer National Alliance’s 16th Annual Conference will be held from July 13–17, 2013 at the Hyatt Regency Washington on Capitol Hill in Washington, DC.[6]
Turn Up the Heat on Ovarian Cancer! A Celebration of Women Chefs
The Ovarian Cancer National Alliance’s signature Gala in Washington, DC, provides a festive opportunity to sample gourmet recipes from dozens of renowned women chefs from the DC area.
National Ovarian Cancer Coalition (NOCC)
National Ovarian Cancer Coalition (NOCC) The NOCC is a separate independent organization from the Ovarian Cancer National Alliance, but they often work together on common goals. The mission of the NOCC is to raise awareness and promote education about ovarian cancer. The Coalition is committed to improving the survival rate and quality of life for women with ovarian cancer. The National Ovarian Cancer Coalition (NOCC) is a nationally recognized organization with a growing nationwide network of Chapters
References
- ↑ http://www.ovariancancer.org/about-us/
- ↑ http://www.ovariancancer.org/take-action/
- ↑ http://www.ovariancancer.org/take-action/federal/
- 1 2 http://www.ovariancancer.org/track-your-symptoms/
- ↑ http://www.ovariancancer.org/sts-toolkit/
- 1 2 http://amcnetwork.com/OCNAconference/welcome.htm
- ↑ http://www.ovariancancer.org/
- ↑ http://www.youtube.com/user/ovariancancer.org/
- ↑ http://www.ovariancancer.org/resources/partner-members/