<?xml version="1.0" encoding="utf-8"?>
<feed xmlns="http://www.w3.org/2005/Atom">
  <title>Key Resources</title>
  <subtitle>Information and links for survivorship, advocacy, and research</subtitle>
  <link rel="alternate" type="text/html" href="http://www.childrenscause.org/resources"/>
  <link rel="self" type="application/atom+xml" href="http://www.childrenscause.org/taxonomy/term/6/atom/feed"/>
  <id>http://www.childrenscause.org/taxonomy/term/6/atom/feed</id>
  <updated>2010-05-17T11:23:05-04:00</updated>
  <entry>
    <title>Survivorship Resources for Teens &amp; Young Adults</title>
    <link rel="alternate" type="text/html" href="http://www.childrenscause.org/resources/survivorship" />
    <id>http://www.childrenscause.org/resources/survivorship</id>
    <published>2009-04-06T17:53:10-04:00</published>
    <updated>2010-10-20T17:45:05-04:00</updated>
    <author>
      <name>ccause</name>
    </author>
    <category term="Key Resources" />
    <summary type="html"><![CDATA[<p>    ]]></summary>
    <content type="html"><![CDATA[<p><!--break--></p><p><img width="200" height="134" align="left" alt="" src="/sites/default/files/imce/legalguide.JPG">Below are some general resources that we recommend for survivors in their teens, twenties, and thirties. For more topical resources, also see</p> <ul> <li>&nbsp;&nbsp;<a href="/resources/legal">Legal</a></li> <li>&nbsp;&nbsp;<a href="/resources/education-employment">Education and Employment </a></li> <li>&nbsp;&nbsp;<a href="/resources/intimacy-sexuality-fertility">Intimacy, Sexuality, and Fertility</a></li></ul><hr><hr> <ul><li><strong><a href="http://www.cancer.org/">American Cancer Society</a>: &nbsp;</strong>Chapters throughout the country offer patient services and programs on cancer research, prevention, detection, treatment, and advocacy. Chapters offer transportation, equipment, social work services, and support groups.</li><li><strong><a href="http://www.healthyminds.org">American Psychiatric Association: </a></strong>&nbsp;This site provides guidelines for choosing a psychiatrist.&nbsp;</li><li><a href="http://www.acor.org/"><strong>Association of Cancer Online Resources</strong></a><strong>: &nbsp;</strong>Many email lists relevant to childhood cancer are hosted here. It also includes publications and information on clinical trials and treatment options.</li><li><strong><a href="http://www.beyondthecure.org/">Beyond the Cure:</a></strong> This site provides information about the late-effects of a childhood cancer diagnosis and treatment.</li><li><strong><a href="http://www.cancercare.org">CancerCare:</a></strong> A national nonprofit organization that provides free professional support services to anyone affected by cancer: &nbsp;people with cancer, caregivers, children, loved ones, and the bereaved. CancerCare programs - including counseling, education, financial assistance, and practical help - are provided by trained oncology social workers and are completely free of charge.</li><li><b><a style="font-weight: inherit; font-style: inherit; font-size: 14px; font-family: inherit; margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; border-top-width: 0px; border-right-width: 0px; border-bottom-width: 0px; border-left-width: 0px; border-style: initial; border-color: initial; color: rgb(51, 102, 153); text-decoration: none; " href="http://www.thewellnesscommunity.org">Cancer Support Community:</a>&nbsp;</b>Formerly Gilda's Club and now working in partnership with The Wellness Community, the Cancer Support Community provides&nbsp;meeting places where men, women, and children living with cancer and their families and friends join with others to build emotional and social support as a supplement to medical care. Free of charge and not-for-profit, Gilda's Club offers support and networking groups, lectures, workshops, and social events in a non-residential, homelike setting. 24/7 online support is also available.</li><li><strong><a href="http://www.cancer.net/">Cancer.Net: </a></strong>&nbsp;This site, sponsored by the American Society of Clinical Oncology, has a helpful section on survivorship including advice for healthy living beyond cancer, rehabilitation, and coping with the fear of recurrence.<b><br></b></li><li><strong><a href="http://www.childhoodbraintumor.org/ombuds.html">Childhood Cancer Ombudsman Program:</a></strong> &nbsp;The Childhood Cancer Ombudsman Program provides complaint investigation and resolution for families of children with cancer and adult survivors of childhood cancer. Inquiries should be directed to the Childhood Brain Tumor Foundation.</li><li><strong><a href="http://www.survivorshipguidelines.org">Children's Oncology Group's Long-Term Follow-Up Guidelines: </a></strong>&nbsp;These guidelines provide recommendations for screening and management of late effects that may potentially arise as a result of having had cancer and/or its treatment. This resource was initially intended for medical professionals and contains medical and scientific terms that may not be familiar to lay persons. The COG strongly recommends discussing this information with your doctor.</li><li><strong><a href="http://www.firstdescents.org/">First Descents: &nbsp;</a></strong>First Descents is a weeklong outdoor experience for young adults with cancer to utilize whitewater kayaking and other outdoor adventure sports to promote emotional, psychological and physical healing.<b><br></b></li><li><strong><a href="http://www.i2y.org">I'm Too Young for This! Cancer Foundation: </a>&nbsp;</strong>A global support community for young adults affected by cancer who get busy living and rock on. Our mission is to end isolation and improve quality of life by providing 'one-stop' access to hard-to-find resources, peer support, and social networks. Stupid cancer. Survivors rule.</li><li><strong><a href="http://www.imermanangels.org/"><img alt="cancer resources for young adults" width="200" height="299" align="right" src="/sites/default/files/imce/imermanangels.JPG">Imerman Angels: </a></strong>&nbsp;Imerman Angels is an organization that carefully matches people who are currently fighting cancer to someone who has survived their battle with the same type of cancer in order to build one-on-one support networks. The service is free and available to cancer fighters and survivors worldwide. <em>(Image: &nbsp;Exhibiting table at CCCA's RTA-Houston conference)</em></li><li><strong><a href="http://www.livestrong.org/">Lance Armstrong Foundation/LIVESTRONG: </a></strong><a href="http://www.livestrong.org/">&nbsp;</a>The Lance Armstrong Foundation/LIVESTRONG web site covers a wide range of topics of interest to cancer survivors from practical advice to survivorship stories.</li><li><strong><a href="http://www.lls.org/">The Leukemia &amp; Lymphoma Society:</a></strong>&nbsp;LLS is dedicated to funding blood cancer research, education, and patient services. The organization's site provides practical information for patients and families including a publication on educational transitions.</li><li><strong><a href="http://www.canceradvocacy.org/">National Coalition for Cancer Survivorship: </a></strong>&nbsp;A patient-led advocacy organization for people with all types of cancer and their families, NCCS also has audio and print materials to help survivors cope.<b><br></b></li><li><strong><a href="http://www.planetcancer.org/">Planet Cancer:</a></strong> &nbsp;Planet Cancer is a community of young adults with cancer that provides a space to "share insights, explore fears, or even give the finger to cancer with other who just plain get it."</li><li><strong><a href="http://www.re-mission.net/site/game/index.php">Re-Mission:</a></strong> &nbsp;A project out of HopeLab, Re-Mission is a cutting-edge video game for teens and young adults with cancer.</li><li><strong><a href="http://www.thesamfund.org">SAMFund for Young Adult Survivors of Cancer: </a></strong>&nbsp;The SAMFund is a nonprofit organization created to help young adult cancer survivors by providing financial support through grants and scholarships.</li><li><strong><a href="http://www.survivoralert.org/">Survivor Alert: </a></strong>&nbsp;Nationwide awareness initiative offering information, links to resources, and recommendations for young adult cancer survivors and the health professionals who treat them.</li><li><strong><a href="http://www.survivorshipatoz.org/">Survivorship A-Z: </a></strong>&nbsp;The mission of this site is to provide the practical information you need to thrive in the "new normal" that exists after a life-changing diagnosis. Our information can be tailored for your life and situation through an Individual Action Plan.</li><li><strong><a href="http://www.tamikaandfriends.org">Tamika and Friends, Inc:</a></strong> &nbsp;Tamika and Friends is a national nonprofit organization designed to raise awareness about cervical cancer and its link to the human papillomavirus through a network of survivors and their friends. Excellent information regarding survivorship and support can be found on the organization's website.</li><li><strong><a href="http://www.teenslivingwithcancer.org">Teens Living with Cancer: </a></strong>&nbsp;Teens Living with Cancer is an online resource dedicated to helping teens deal with the late effects of cancer. This resource provides information on exercise and nutrition. There is also an online support group. The website is available in English and Spanish.</li><li><strong><a href="http://www.cancerproject.org/">The Cancer Project: </a>&nbsp;</strong>The Cancer Project is a collaborative effort of physicians, researchers, and nutritionists who have joined together to educate individuals, families, and the public on the benefits of a healthy diet for cancer prevention and survival. The Cancer Project provides comprehensive educational materials, conducts clinical research studies, and publicizes the value of a healthy diet in cancer prevention and survival.</li><li><strong><a href="http://www.gwumc.edu/gwci/mandi.html">The GW Cancer Survivorship Center - Thriving After Cancer (TAC) Program</a></strong>: &nbsp;The Thriving After Cancer Program is a collaboration of The George Washington Cancer Institute (GWCI), the GW Medical Faculty Associates (MFA), Children's National Medical Center (CNMC), and the GW Center for Integrative Medicine. The goal of the TAC is to address the long-term health care needs of adult survivors of pediatric cancer.&nbsp;</li><li><strong><a href="http://www.ulmanfund.org">The Ulman Fund for Young Adults: </a></strong>&nbsp;The Fund's mission is to provide support programs, education, and resources, free of charge, to benefit young adults who are affected by cancer and to promote awareness and prevention of cancer.</li><li><strong><a href="http://www.vitaloptions.org/">Vital Options:</a></strong>&nbsp;Vital Options is a not-for-profit cancer communications, support, and advocacy organization. Vital Options sponsors the cancer talk show, The Group Room radio show.</li><li><strong><a href="http://voicesofsurvivors.org">Voices of Survivors:</a></strong> &nbsp;This is a project dedicated to exploring what "survivorship" means to each<img width="250" height="167" align="right" alt="" src="/sites/default/files/imce/youngsurvivalcoalition.JPG"> individual, in the form of an ongoing, online documentary.&nbsp;</li><li><strong><a href="http://www.thewellnesscommunity.org/">The Wellness Community:</a> &nbsp;</strong>TWC is an organization dedicated to providing education and resources to people affected by cancer - helping them learn vital skills that will enable them to regain control, reduce isolation, and restore hope, regardless of the stage of their disease. TWC centers are located throughout the country.</li><li><strong><a href="http://www.theyellowumbrella.org">The Yellow Umbrella:</a></strong> &nbsp;This empowerment organization was founded by cervical cancer survivor Christine Baze, and uses the powerful connection of music to spread education, information, inspiration, and hope to survivors.</li><li><strong><a href="http://www.youngsurvival.org">Young Survival Coalition: </a></strong>&nbsp;The Young Survival Coalition (YSC) is the only international nonprofit network of breast cancer survivors and supporters dedicated to the concerns and issues that are unique to young women and breast cancer. <em>(Image: Exhibiting table at CCCA's RTA-Houston conference)</em></li></ul>    ]]></content>
  </entry>
  <entry>
    <title>IOM Reports</title>
    <link rel="alternate" type="text/html" href="http://www.childrenscause.org/resources/iom-reports" />
    <id>http://www.childrenscause.org/resources/iom-reports</id>
    <published>2009-04-07T18:05:10-04:00</published>
    <updated>2011-12-15T13:13:00-05:00</updated>
    <author>
      <name>ccause</name>
    </author>
    <category term="Key Resources" />
    <summary type="html"><![CDATA[<p>December 15, 2011: &nbsp;Testimony on Drug Shortages from the Government Accountability Office -- <a href="/sites/default/files/imce/Drug_Shortage_GAO.pdf">"FDA's Ability to Respond Should be Strengthened"</a> - Statement of Marcia Crosse, Director, Health Care</p><hr><p>    ]]></summary>
    <content type="html"><![CDATA[<p>December 15, 2011: &nbsp;Testimony on Drug Shortages from the Government Accountability Office -- <a href="/sites/default/files/imce/Drug_Shortage_GAO.pdf">"FDA's Ability to Respond Should be Strengthened"</a> - Statement of Marcia Crosse, Director, Health Care</p><hr><p><!--break--></p><p>April 2010 Report:&nbsp;</p><p><a href="http://www.iom.edu/~/media/Files/Report%20Files/2010/A-National-Cancer-Clinical-Trials-System-for-the-21st-Century-Reinvigorating-the-NCI-Cooperative/NCI%20Cancer%20Clinical%20Trials%202010%20%20Report%20Brief.ashx"><img width="200" height="297" alt="" src="/sites/default/files/imce/IOM_Report_-_April_0.jpg"></a></p><p>CCCA President and Founder Susan L. Weiner was one of the collaborating editors in the development of the following Institute of Medicine reports on Childhood Cancer:</p> <!-- Start NAP Book Display --><table class="iom"><tbody><tr><td colspan="2" style="width: 129px; height: 38px;" width="129" height="38"><img alt="" style="border: medium none ;" width="129" height="38" src="http://images.nap.edu/images/widgetdisplay_nap1.gif"></td><td rowspan="4" style="margin: 0; padding: 0; vertical-align: top; width: 29px; background-color: #900;" width="29" align="left" bgcolor="#990000"><img style="border: medium none ;" alt="" width="29" height="200" src="http://images.nap.edu/images/widgetdisplay_nap2.gif"></td></tr><tr><td style="width: 130px; height: 50px;" width="130"><div style="margin: 0 auto; padding: 2px 5px 10px 0; width: 115px; height: 50px;"><!--insert book title--><a target="_blank" style="font-size: 11px; line-height: 13px;" href="http://www.nap.edu/catalog.php?record_id=11259&amp;utm_source=Network&amp;utm_medium=Widgetv2&amp;utm_content=v2&amp;utm_campaign=Widget">Making Better Drugs for Children with Cancer ...</a></div></td></tr><tr><td width="130" align="center"><!--insert tinycov image--><img alt="" style="border: 1px solid #000;" width="70" src="http://images.nap.edu/images/cover.php?id=11259&amp;type=tinycov"></td></tr><tr><td style="padding: 2px; font-size: 11px;">Read this FREE online!<br><a style="font-size: 9px;" href="http://www.nap.edu/openbook.php?record_id=11259&amp;utm_source=Network&amp;utm_medium=Widgetv2&amp;utm_content=v2&amp;utm_campaign=Widget">Full Book</a></td></tr></tbody></table><!-- End NAP Book Display --><p><br>  <!-- Start NAP Book Display --></p><table class="iom"><tbody><tr><td colspan="2" style="width: 129px; height: 38px;" width="129" height="38"><img alt="" style="border: medium none; margin: 0; padding: 0; vertical-align: top; width: 129px; height: 38px;" src="http://images.nap.edu/images/widgetdisplay_nap1.gif"></td><td rowspan="4" style="margin: 0; padding: 0; vertical-align: top; width: 29px;" valign="top" width="29" align="left" bgcolor="#990000"><img style="border: medium none" alt="" width="29" height="200" src="http://images.nap.edu/images/widgetdisplay_nap2.gif"></td></tr><tr><td style="width: 130px; height: 50px;"><div style="margin: 0 auto; padding: 2px 5px 10px 0; width: 115px; height: 50px;"><!--insert book title--><a target="_blank" style="margin: 0; padding: 0; font-size: 11px; line-height: 13px; " href="http://www.nap.edu/catalog.php?record_id=10767&amp;utm_source=Network&amp;utm_medium=Widgetv2&amp;utm_content=v2&amp;utm_campaign=Widget">Childhood Cancer Survivorship: ...</a></div></td></tr><tr><td width="130"><!--insert tinycov image--><img alt="" style="border: 1px solid #000;" width="70" src="http://images.nap.edu/images/cover.php?id=10767&amp;type=tinycov"></td></tr><tr><td style="padding: 2px; font-size: 11px;">Read this FREE online!<br><a style="font-size: 9px; " href="http://www.nap.edu/openbook.php?record_id=10767&amp;utm_source=Network&amp;utm_medium=Widgetv2&amp;utm_content=v2&amp;utm_campaign=Widget">Full Book</a> | <a style="font-size: 9px; " href="http://www.nap.edu/nap-cgi/execsumm.cgi?record_id=10767&amp;utm_source=Network&amp;utm_medium=Widgetv2&amp;utm_content=v2&amp;utm_campaign=Widget">PDF Summary</a> | <a style="font-size: 9px; " href="http://books.nap.edu/html/childhood_cancer/reportbrief.pdf?utm_source=Network&amp;utm_medium=Widgetv2&amp;utm_content=v2&amp;utm_campaign=Widget">PDF Report Brief</a></td></tr></tbody></table><!-- End NAP Book Display -->    ]]></content>
  </entry>
  <entry>
    <title>Medical Information</title>
    <link rel="alternate" type="text/html" href="http://www.childrenscause.org/resources/medical" />
    <id>http://www.childrenscause.org/resources/medical</id>
    <published>2009-04-06T18:38:56-04:00</published>
    <updated>2010-05-17T11:23:05-04:00</updated>
    <author>
      <name>ccause</name>
    </author>
    <category term="Key Resources" />
    <summary type="html"><![CDATA[<p>    ]]></summary>
    <content type="html"><![CDATA[<p><!--break--></p><dl> <dt>Journal of Clinical Oncology --- <em>April 19, 2010</em>: &nbsp;</dt><a href="http://jco.ascopubs.org/cgi/reprint/JCO.2009.27.0421v1"><strong>Outcomes for Children and Adolescents with Cancer: Challenges for the 21st Century&nbsp;</strong></a></dl><p>This report provides an overview of current childhood cancer statistics to facilitate analysis of the impact of past research discoveries on outcome and provide essential information for prioritizing future research directions.&nbsp;</p><p>&nbsp;</p><dl><dt><a href="http://www-seer.ims.nci.nih.gov/">U.S. SEER Program 1975-1995</a></dt> <dd>Cancer Incidence and Survival among Children and Adolescents</dd></dl><dl><dt><a href="http://www.hospital.com">Hospital.com</a><br></dt>News and information surrounding the hospital community, including news and reports about children's hospitals around the country.<dt><a href="http://www.healthprivacy.org/">Institute for Health Care Research and Policy</a></dt> <dd>Georgetown University </dd><dd>A project dedicated to ensuring health privacy whose site has resources and analysis.</dd> <dt><a href="http://www.medterms.com/">Medical Dictionary Online</a></dt> <dd>One of several searchable sites for medical definitions.</dd> <dt><a href="http://www.nlm.nih.gov/medlineplus">Medline Plus</a></dt> <dd>This easy to use consumer-oriented site allows you to search medical literature for articles on any disease.</dd> <dt><a href="http://www.oncolink.com/">Oncolink</a></dt> <dd>This site from the University of Pennsylvania is an informative resource on childhood and other cancers.</dd> <dt><a href="http://www.fda.gov/cder/cancer">Oncology Tools</a></dt> <dd>A new Food and Drug Administration site is an excellent resource for cancer information, including data about approved cancer drugs, disease summaries, FDA regulations, patient internet resources and more.</dd> </dl>    ]]></content>
  </entry>
</feed>

