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  • News and Events - National Bone Marrow Transplant Link
    twice a year in spring and fall call for dates Chronic Graft versus Host Disease cGVHD is one of the most difficult long term complications following allogeneic transplant It is associated with decreased quality of life impaired functional status and the continued need for immuno suppressive medication and difficulties that arise from this need National Institutes of Health Since 2006 the nbmtLINK has recognized the unique circumstances and issues associated with cGVHD by offering telephone education and support groups for individuals living with the disease The groups are facilitated by staff from the National Institutes of Health including Sandra Mitchell PhD CRNP AOCN and Michael Krumlauf RN BSN and Steven Z Pavletic MD Head GVH and Autoimmunity Unit To participate in these groups please contact Cindy Goldman at 800 546 5268 or email cindygoldman nbmtlink org Caregivers Guide wins Excellence in Patient Education Award October 2009 The nbmtLINK s Caregivers Guide for Bone Marrow Stem Cell Transplant Practical Perspectives won the 2009 Excellence in Patient Education Award from the Cancer Patient Education Network CPEN CPEN previously recognized nbmtLINK for its groundbreaking partnership with the National Institutes of Health through their Gold Star award This collaboration has resulted in several successful

    Original URL path: http://www.nbmtlink.org/news_events/news.htm (2015-03-26)
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  • Make a Contribution - National Bone Marrow Transplant Link
    gift to the National Bone Marrow Transplant Link will make a difference in the lives of BMT patients caregivers and families who face overwhelming challenges and desperately seek our help every day Through your generosity we will continue to provide emotional support practical help encouragement and hope Please make your contribution today and be assured that the information you provide through this web site will be kept confidential and secured with VeriSign encryption codes If you prefer making your contribution by phone or if you have any questions please call toll free 800 546 5268 There are many ways to support the work of the National Bone Marrow Transplant Link Make a cash donation Make a gift in memory of a loved one or to honor a special occasion Make a gift of appreciated stocks Make a matching gift through your company Organize a special event for the nbmtLINK in your community Remember the nbmtLINK in your will Your gift will be acknowledged by letter within a few days The nbmtLINK is funded entirely through the generosity of individuals corporations and foundations The nbmtLINK is an independent non profit 501 c 3 charitable organization and all contributions are tax deductible

    Original URL path: http://www.nbmtlink.org/donate.htm (2015-03-26)
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  • Web Links - National Bone Marrow Transplant Link
    in need It s an easy to use private group calendar specifically designed for organizing helpers where everyone can pitch in with meals delivery rides and other tasks necessary for life to run smoothly during a crisis Needs are posted on a personalized web site where the group calendar is automatically updated and members sign up to help National Alliance for Caregiving www caregiving org Recognizing that family caregivers provide important societal and financial contributions toward maintaining the well being of those they care for the Alliance s mission is to be the objective national resource on family caregiving with the goal of improving the quality of life for families and care recipients National Family Caregivers Association www thefamilycaregiver org The National Family Caregivers Association NFCA supports empowers educates and speaks up for the more than 50 million Americans who care for a chronically ill aged or disabled loved one NFCA reaches across the boundaries of different diagnoses different relationships and different life stages to address the common needs and concerns of all family caregivers National Respite Locator Service www respitelocator org The Chapel Hill Training Outreach Project Inc CHTOP is a national provider of training and technical assistance services and audiovisual and print materials as well as a provider of direct services to families and children such as Head Start Rosalynn Carter Institute www rosalynncarter org Through research education and training the RCI promotes the mental health and well being of individuals families and professional caregivers promulgates effective caregiving practices builds public awareness of caregiving needs and advances public and social policies that enhance caring communities Strength for Caring www strengthforcaring com Strength for Caring is an online resource and community for family caregivers Strength for Caring helps family caregivers take care of their loved ones and themselves Strength for Caring is part of The Caregiver Initiative created by Johnson Johnson Consumer Products Company Division of Johnson Johnson Consumer Companies Inc Today s Caregiver Magazine www caregiver com Caregiver Media Group is a leading provider of information support and guidance for family and professional caregivers Well Spouse Foundation www wellspouse org Well Spouse is a national not for profit membership organization which gives support to wives husbands and partners of the chronically ill and or disabled Children s Programs and Services 2bMe www 2bme org 2bMe org serves as an online component of Look Good Feel Better for Teens a free public service program for adolescents 13 to 17 that provides information dealing with the appearance and sociological side effects related to cancer and its treatment American Childhood Cancer Organization formerly Candlelighters Childhood Cancer Foundation www candlelighters org American Childhood Cancer Organization s mission is to address the needs of families through programs that emphasize information advocacy awareness and research Founded in 1970 ACCO is one of the largest grassroots national organizations dedicated to improving the lives of children and adolescents with cancer and their families Children With Leukemia c o The Jennifer Lynn Stroud Foundation www jlsfoundation org Children With Leukemia is a product of the Jennifer Lynn Stroud Foundation It is produced by the family and friends of Jennifer Stroud It contains useful information references practical suggestions and references to information that were useful to the Stroud family in Jennifer s 26 month battle with acute myeloid leukemia Children s Leukemia Foundation of Michigan Michigan Residents www leukemiamichigan org The mission of Children s Leukemia Foundation of Michigan is to provide and promote compassionate personalized support to people in Michigan affected by leukemia and other related disorders Children s Leukemia Research Association Inc www childrensleukemia org The Children s Leukemia Research Association Inc also known as the National Leukemia Research Association was founded in 1965 as a not for profit organization dedicated to raising funds to support research efforts towards finding the causes and cure for Leukemia Children s Organ Transplant Association COTA www cota org The Children s Organ Transplant Association provides fundraising assistance for children and young adults needing life saving transplants and promotes organ marrow and tissue donation Group Loop Online Support for Teens with Cancer www grouploop org Group Loop is a safe place for teens with cancer and their parents to build an online community to find support education and hope when dealing with a cancer diagnosis Kids Cancer Network www kidscancernetwork org In 1992 young cancer survivor Kenon Neal founded Kids Cancer Network to provide a dose of hopeTM for kids and their families isolated by the rigors of childhood cancer treatment Kids Konnected www kidskonnected org The original Kids Konnected was formed in 1993 as Komen Kids by then ll year old Jon Wagner Holtz after his mother was treated for breast cancer At that time there were no programs where Jon could talk to other kids that knew what it was like to have a sick parent So Jon decided to change things by starting his own hotline to help other kids going through similar situations And that s how Kids Konnected got started CureSearch http www curesearch org CureSearch unites the world s largest childhood cancer research organization the Children s Oncology Group and the National Childhood Cancer Foundation through our shared mission to cure childhood cancer Research is the key to a cure National Children s Cancer Society http nationalchildrenscancersociety com The mission of The National Children s Cancer Society is to improve the quality of life for children with cancer by promoting children s health through financial and in kind assistance advocacy support services and education Starbright Foundation www starbright org The STARBRIGHT Foundation is dedicated to the development of projects that empower seriously ill children to combat the medical and emotional challenges they face on a daily basis STARBRIGHT projects do more than educate or entertain they address the core issues that accompany illness the pain fear loneliness and depression that can be as damaging as the sickness itself SuperSibs www supersibs org As SuperSibs goes nationwide our goal is to reach out to brothers and sisters of over 10 000 children who are diagnosed with cancer each year Through our work these siblings will feel valued validated heard supported and delighted as recipients of SuperSibs services and as participants in SuperSibs activities Clinical Trial Information BMT Support Online www bmtsupport org BMT Support Online was founded in June 1995 by Kendra Marsh a bone marrow transplant recipient Feeling the isolation of not having a BMT support group close to home to provide emotional support Kendra began searching the internet for others in similar circumstances In one month s time the response from others in search of the same type of support was overwhelming Cancer Hope Network www cancerhopenetwork org Cancer Hope Network is a not for profit organization that provides free and confidential one on one support to cancer patients and their families We provide that support by matching cancer patients and or family members with trained volunteers who have themselves undergone and recovered from a similar cancer experience Center Watch Clinical Trials Listing Service www centerwatch com CenterWatch is a Boston based publishing and information services company and a business of The Thomson Corporation We provide information services used by patients pharmaceutical biotechnology and medical device companies CROs and research centers involved in clinical research around the world Coalition of National Cancer Cooperative Groups Inc www cancertrialshelp org The Coalition of Cancer Cooperative Groups Inc is the nation s premier network of cancer clinical trials specialists Our members include cooperative groups cancer centers academic medical centers community hospitals physician practices and patient advocate groups Together they represent the interests of more than 17 000 cancer investigators hundreds of patient advocates and thousands of patients worldwide Coping Association of Cancer Online Resources Listserv http listserv acor org The ACOR Mailing List Center currently offers more than 130 public online information and support mailing lists providing a unique group of empowering communities to more than 75 000 patients caregivers or anyone looking for answers about cancer and related disorders National Cancer Institute www cancer gov clinical trials NCI has an important role to play in the drug development process in the United States From its expansive clinical trials program to the drug discovery research it performs and funds the institute believes it has an essential duty to expedite the discovery and development of interventions that will save lives National Institute of Health www clinicaltrials gov ClinicalTrials gov provides regularly updated information about federally and privately supported clinical research in human volunteers ClinicalTrials gov gives you information about a trial s purpose who may participate locations and phone numbers for more details The information provided on ClinicalTrials gov should be used in conjunction with advice from health care professionals Planet Cancer www planetcancer org Welcome to Planet Cancer No we didn t choose to come here either But just like you we ended up as honorary natives of this terrible and wonderful world Like other planets Planet Cancer rotates regularly between the dark side of night and the brightness of day All too often we lose ourselves on the dark side forgetting that where there is night day must follow and where there is life there is the light of hope and laughter Although we acknowledge and accept the night we want to remind you of the lightness of day by recording on these pages the often entertaining frequently bizarre and occasionally informative experiences and thoughts of your fellow natives on Planet Cancer Robin Blue Paul Cox and Heidi Schultz Adams Dallas Texas 1995 Fertility American Association of Tissue Banks www aatb org The American Association of Tissue Banks AATB is a scientific not for profit peer group organization founded in 1976 to facilitate the provision of transplantable cells and tissues of uniform high quality in quantities sufficient to meet national needs American Society for Reproductive Medicine www asrm org The Vision of the American Society for Reproductive Medicine ASRM is to be the nationally and internationally recognized leader for multidisciplinary information education advocacy and standards in the field of reproductive medicine Fertile Hope www fertilehope org Founded in October 2001 Fertile Hope is a national nonprofit organization dedicated to providing reproductive information support and hope to cancer patients whose medical treatments present the risk of infertility Genetics and IVF Institute www givf com The Genetics IVF Institute is the world s largest fully integrated specialized provider of infertility treatment and genetic services and is widely respected for its excellence innovation integrity and total commitment to each and every patient Resolve The National Infertility Association www resolve org We are a dynamic 31 year old organization dedicated to providing you the education advocacy and support you need to face the disease of infertility Financial Assistance Fundraising Insurance America s Health Insurance Plans www ahip org AHIP is the national association representing nearly 1 300 member companies providing health insurance coverage to more than 200 million Americans Be The Match www BeTheMatch org Be The Match has a team dedicated to supporting patients caregivers and families before during and after transplant We offer you confidential one on one support financial guidance and free educational resources DVDs booklets online tools and more Our goal is to get you what you need when you need it We can help you learn more about transplant as a treatment option plan for transplant and learn what to expect after transplant Cancer Care Co Payment Assistance Foundation www cancercarecopay org The Cancer Care Co Payment Assistance Foundation is a not for profit organization established in 2007 to address the needs of individuals who cannot afford their insurance co payments to cover the cost of medications for treating cancer Cancer Legal Resource Center www lls edu academics candp clrc html The Cancer Legal Resource Center provides information and educational outreach on cancer related legal issues to people with cancer and other impacted by the disease Children s Organ Transplant Association COTA www cota org The Children s Organ Transplant Association COTA exists to assist patients who require a life saving organ bone marrow cord blood or stem cell transplant We work with any patient who needs a transplant due to a genetic disease such as Cystic Fibrosis and all patients 21 and younger for any disease or complication Dean Randazzo Cancer Foundation www deanrandazzocancerfoundation org The foundation s purpose is to raise money for cancer research and awareness and assist individuals battling cancer both financially and emotionally To date they have donated over 100 000 00 to worthy beneficiaries who fit these criteria HelpHOPELive Formerly National Transplant Assistance Fund www HelpHOPELive org NTAF has over 20 years experience empowering you to raise money in your communities to cover uninsured medical expenses related to transplantation and catastrophic injury Medicare Rights Center www medicarerights org Medicare Rights Center MRC is the largest independent source of health care information and assistance in the United States for people with Medicare Founded in 1989 MRC helps older adults and people with disabilities get good affordable health care My Friends Care Bone Marrow Transplant Fund Michigan Residents www myfriendscare org My Friends Care Bone Marrow Transplant Fund was formally incorporated as a 501 c 3 organization in 1989 We were started by a woman in Rochester Hills Michigan who had a son in need of a transplant and another family with a loved one who needed a transplant Since then we ve helped hundreds of families throughout Michigan and have really grown in the past few years due to the changing nature of bone marrow transplants as a treatment for many types of cancers and other blood disorders National Association of Hospital Hospitality Houses www nahhh org The National Association of Hospital Hospitality Houses Inc is a non profit corporation serving facilities that provide lodging and other supportive services to patients and their families when confronted with medical emergencies Each facility assures that a homelike environment is provided to persons who must travel to be with a patient or to receive necessary outpatient care National Foundation for Transplants www transplants org NFT provides financial assistance to transplant candidates and recipients when they face major transplant related costs not covered by insurance NFT provides assistance based on a patient s financial need and on the availability of funds Funds come from NFT campaigns conducted by local volunteers in honor of a patient in their community NFT also advocates on behalf of patients in negotiating bills Needy Meds www needymeds com Provides current information on drug assistance programs including requirements and applications forms discount drug cards and disease based assistance programs Nielson Organ Transplant Foundation Northeast Florida Residents www notf org The Nielsen Organ Transplant Foundation was founded in 1982 when a young Jacksonville FL woman needed a heart transplant Many people came together to raise money for Cheryl Nielsen s Heart Fund Sadly Cheryl passed away before she could be transplanted and the Nielsen Organ Transplant Foundation was developed to improve the quality of life of all transplant patients in the Northeast Florida area Patient Advocate Foundation www patientadvocate org Patient Advocate Foundation is a national non profit organization that seeks to safeguard patients through effective mediation assuring access to care maintenance of employment and preservation of their financial stability Patient Services Incorporated PSI www uneedpsi org Assists patients with certain chronic illnesses e g CML CTCL and their families with health insurance premiums and medicine co payments based on the severity of their medical and financial need Pharmaceutical Research and Manufacturers of America www pparx org The Partnership for Prescription Assistance brings together America s pharmaceutical companies doctors other health care providers patient advocacy organizations and community groups to help qualifying patients who lack prescription coverage get the medicines they need through the public or private program that s right for them Ticket to Work www yourtickettowork com The Ticket to Work and Self Sufficiency Program is an employment program for people with disabilities who are interested in going to work Together Rx Access Card www together rxaccess com Helps those without prescription drug coverage save on brand name prescription drugs other prescription products and a wide range of generic drugs Certain criteria must be met in order to receive savings Foreign Language ACS Informacion de referencia sobre el cancer www cancer org docroot esp esp 0 asp Aprenda sobre los distintos tipos de cáncer los factores de riesgo la prevención el tratamiento y más Haga clic en Sign In que se encuentra en la esquina superior derecha de la pantalla para suscribirse a la página Después seleccione Spanish como idioma preferido para obtener fácil acceso a los documentos en español Los formularios de suscripción están en inglés Cancer gov Algunos documentos especificos estan en espanol www cancer gov espanol Espanol healthfinder http healthfinder gov espanol healthfinder español contiene fuentes de información seleccionadas en español que le pueden servir de guía para tomar decisiones con relación a su salud Para comenzar su búsqueda ingrese en el cuadro de búsqueda anterior el texto que desea investigar o escoja uno de los tema listados a continuación Institutos Nacionales de la Salud http salud nih gov MedlinePlus Información de salud para usted Disease Related Information Amyloidosis Amyloidosis Support Network www amyloidosis org The Amyloidosis Support Network is committed to improving the survivability and quality of life of patients We do so by linking those affected by amyloidosis to experienced medical and emotional support resources and promoting awareness among the public and professionals so that the disease can be recognized earlier and appropriately treated Anemia Aplastic Anemia Myelodysplatic Syndrome MDS International Foundation Inc www aplastic org The Aplastic Anemia MDS International Foundation is the oldest and largest patient advocate and support organization for bone marrow diseases providing life saving hope knowledge and support to hundreds of thousands of patients and their families around the world Fanconi Anemia Research Fund Inc www fanconi org Our Mission To find effective treatments and a cure for Fanconi anemia and to provide education and support services to

    Original URL path: http://www.nbmtlink.org/web_links.htm (2015-03-26)
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  • nbmtLINK Online Library Search Tips
    to make sure you find the information you re looking for If you re having trouble locating what you need or would like a personalized information search feel free to contact our staff by email library nbmtlink org phone 800 546 5268 or by clicking on Ask the nbmtLINK to the left of the screen Survey Once you ve finished using the Online Library we hope you ll take a few moments to fill out a brief survey Your responses will help us make improvements to the library and add new features based on your needs To do so please click on the User Survey to the left of the screen About the National Bone Marrow Transplant Link nbmtLINK The mission of the nbmtLINK is to help patients caregivers and families cope with the social and emotional challenges of bone marrow stem cell transplant from diagnosis through survivorship by providing vital information and personalized support services The nbmtLINK s web site includes the organization s original publications that are downloadable free of charge Please take time to browse through these publications and print them out if you d like Or if you want hard copies of the booklets for a

    Original URL path: http://www.nbmtlink.org/online_library/index.htm (2015-03-26)
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  • Graft Versus Host Disease: Living With the After Effects of Bone Marrow/Stem Cell Transplant - Resources and Support - National Bone Marrow Transplant Link
    copy Please call us for quantity discounts Click here to download a PDF version of this guide 4306K 146pg In order to view download and or print documents that are in Adobe PDF format you will need to have the free Adobe Acrobat Reader installed on your computer Introduction Chapters 1 Overview of Chronic Graft Versus Host Disease 2 Diagnosis of Chronic GVHD Signs and Symptoms 3 Treatment of Chronic

    Original URL path: http://www.nbmtlink.org/resources_support/graft-versus-host-disease/index.htm (2015-03-26)
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  • Voices of Hope and Healing
    Click here for new audio download

    Original URL path: http://www.nbmtlink.org/voices/index.html (2015-03-26)
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  • Voices of Hope and Healing
    repeat repeat off Voices of Hope Healing Update Required To play the media you will need to either update your browser to a recent version or update your Flash plugin To download an mp3 version of this podcast click here

    Original URL path: http://www.nbmtlink.org/voices/media/voices.html (2015-03-26)
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  • nbmbtLINK Webcasts/Podcasts - National Bone Marrow Transplant Link
    the Challenges of Chronic Graft Versus Host Disease in Children and Adolescents Part I The Medical Aspects and Management of Chronic Graft Versus Host Disease in Children Adolescents features Dr Kristin Baird of the National Institutes of Health and Kimberly Thormann MA CPNP from Children s Memorial Hospital Their webcast Provides an overview of stem cell transplants and factors that may impact the development of cGVHD Discusses the prevention and development of cGVHD and Offers information on identifying and managing the disease in children adolescents Watch Part I www presentme com audio2009 20090901NBMTpart1 Part II Families Coping with Chronic Graft Versus Host Disease cGVHD in Children Adolescents features Lynn Hardesty MSS LICSW BCD from Children s National Medical Center This presentation Provides parents and other family members with practical advice on how to cope with chronic cGVHD and Offers the perspectives and advice of three parents whose children are living with the disease Watch Part II www presentme com audio2009 20090901NBMTpart2 Each webcast is 40 minutes long Many thanks to the National Marrow Donor Program for co sponsoring this important resource We would also like to recognize our presenters Dr Baird Kim Thormann and Lynn Hardesty for their participation in addition to the three parents Brent Kathy and Dana for offering their perspective and insights Back to Top Link Coping with Chronic Graft Versus Host Disease This 30 minute presentation provides an overview of Chronic Graft Versus Host Disease cGVHD recommendations for care of the cGvHD patient and personal reflections from those living with the disease Watch www presentme com flash 20080716nbmtlink We want to thank our presenters Dr Steven Pavletic Dr Sandra Mitchell and Kate Castro from the National Institutes of Health and patients David and Gerlinde for their contribution to this valuable new resource for bone marrow transplant

    Original URL path: http://www.nbmtlink.org/webcasts/index.htm (2015-03-26)
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