Resources

Many websites and organizations provide comfort and resources for critically ill children and their families. Click below to find links to many social networks, options for financial aid, and information about the latest clinical trials and treatment opt


    Other Support Links

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    General Support

    Brave Kids - Find medical information and resources for children with special needs, chronic illness and disabilities such as: autism, cancer, cerebral palsy, ADHD, ADD and more. Brave Kids provides parents and children with information on health services, financial assistance, support groups, child care, dental assistance, camps, transportation and physical therapy to name a few (description from site).

    KidsHealth - If you're looking for information you can trust about kids and teens that's free of "doctor speak," you've come to the right place. KidsHealth is the most-visited site on the Web for information about health, behavior, and development from before birth through the teen years (description from site).

    Jeremy Foundation - The Jeremy Foundation provides parent care packages containing gas cards, phone cards, parking vouchers and change for vending machines. They help any child with cancer whose family is able to demonstrate financial need regardless of socio-economic status prior to diagnosis. The Jeremy Foundation serves children from birth to age eighteen and their families (description from site).

    Sibling Support

    When illness strikes, it affects not only the patient but the entire family unit.  That impact is magnified for a child's brother or sister.  There is a powerful bond between siblings, and the realization that the connection could be lost is traumatic.  It is important that the sibling understand what is happening to their brother or sister and learn to deal with it in a healthy and positive manner.  The sites below can help to carry out that process.

    Sibling Support Project - The Sibling Support Project is the only national effort dedicated to the interests of over six million brothers and sisters of people with special health, mental health, and developmental needs. Our mission is accomplished by training local service providers on how to create community-based peer support programs for young siblings (description from site).

    Super Sibs! - SuperSibs! is dedicated to ensuring ongoing comfort, recognition and support to children with brothers and sisters who have cancer. SuperSibs! helps these siblings to redefine the cancer experience to use these life lessons for strength, courage and hope as they move into the future. No longer are these "shadow survivors" forgotten, and alone as they battle feelings of fear, insignificance, guilt, helplessness, anger and grief (description from site).

    Comfort Zone Camp - Comfort Zone Camp is the nation’s largest bereavement camp. Comfort Zone Camps are offered free of charge to children ages 7-17 who have experienced the death of a parent, sibling or primary caregiver. The camps are held year-round in California, Massachusetts, New Jersey and Virginia.  Comfort Zone Camps create an environment where grieving children can have fun and break the isolation death often brings, while learning valuable coping skills for their daily lives (description from site).

    Wish Granting Foundations

    Everyone needs a break from all the stress that accompanies the numerous treatments and tests that a critically ill child and his or her family must endure.  Whatever your wish or dream is, these organizations can help you fulfill them!

    Dream Factory - The Dream factory grants dreams to critically and chronically ill children from the ages of three through eighteen. The Dream Team of volunteers roll up their sleeves and get to work making reservations, finding contacts for celebrities, sports figures and other famous people, finding gifts-in-kind and other volunteers. In essence, whatever it takes to make a dream come true that will provide a memorable and inspirational experience for the children and families alike (description taken from site).

    Children's Wish Foundation International - Wish Coordinators make up a professional team with over 20 years of experience in creating unique, carefree wishes that, depending on the type of wish, include all travel arrangements, accommodations, tickets, full detailed itineraries, expense money, volunteer support, carefully planned presentations to fit the family’s schedule, and the promise of lots of surprises along the way. Every detail is planned to perfection, allowing the family to enjoy "Family Time", creating precious memories to forever cherish (description taken from site).

    A Special Wish Foundation - A Special Wish Foundation, Inc. is a non-profit charitable organization dedicated to granting the wishes of children under the age of 21 who have been diagnosed with a life-threatening disorder. Founded in 1982, A Special Wish Foundation was one of the first wish-granting organizations in the United States, and now has chapters across the U.S. and one in Moscow, Russia. Since 1982, wishes have been granted to thousands of qualifying children (description from site).

    Believe In Tomorrow - Unique healing environment of hospital and retreat housing facilities, where families find hope and comfort. Since 1986, Believe In Tomorrow has provided over 300,000 overnight accommodations, helping families stay together in the midst of a medical crisis (description from site).

    Make-A-Wish Foundation - Since 1980, the Make-A-Wish Foundation® has given hope, strength and joy to children with life-threatening medical conditions. From humble beginnings with one boy’s wish to be a police officer, they’ve evolved into an organization that grants a child’s wish in the U.S. every 40 minutes (description from site).

    Starlight Children's Foundation - For more than 25 years, Starlight Children’s Foundation has dedicated itself to improving the quality of life for children with chronic and life-threatening illnesses and life-altering injuries by providing entertainment, education and family activities that help them cope with the pain, fear and isolation of prolonged illness (description from site).

    General Cancer Support

    HopeWell Cancer Support - The mission of HopeWell Cancer Support is to create a community for all people with cancer, their families and friends, which encourages an exchange of information, the development of a support system and the presence of hope. This organization is based out of Lutherville, Maryland. (description from site).

    Candlelighters Childhood Cancer Foundation - The Candlelighters Childhood Cancer Foundation National Office was founded in 1970 by concerned parents of children with cancer (description from site). This site explains clearly, in age appropriate language, what cancer means directly to the child diagnosed with the disease.  It also includes support groups, upcoming events, clinical trials, reading material, and links to an incredible amount of helpful sites.

    Cure Search: National Childhood Cancer Foundation - CureSearch unites the world's largest childhood cancer research organization, the Children's Oncology Group, and the National Childhood Cancer Foundation through their mission to cure childhood cancer (description from site). The site does a good job at directing information towards specific groups such as friends, family, parents, and of course, the patient.  It also lets you customize the type of cancer you have as well as you age for more pertinent information.

    I'm Too Young For This! Cancer Foundation - Founded in 2007 by young adult survivors and for young adult survivors, the I'm Too Young For This! Cancer Foundation is a global leader in the fight against cancer working exclusively on behalf of survivors and their care providers under the age of 40.  Opportunities like weekend spa retreats, online forums and blogs, social networks, camping excursions, fertility education, peer counseling, college scholarships, financial aid, happy hours and more (description from site)!

    Planet Cancer -  Young adults with cancer slip into a lonely no-man's land. Too old for the instant community of a children's hospital, they still don't fit in with the over-50 community that overwhelmingly populates adult cancer wards. Because young adults with cancer are a relatively small group, the difficulty of finding peer support is increased exponentially, forcing many to deal in isolation with issues specific to this age and stage of life: dating with cancer, disclosure to a potential employer, long-term insurance issues, moving back home, loss of fertility, or having to quit school or a newly launched career (description from site).

    Group Loop - Group Loop is a safe place online for teens with cancer away from the daily pressures of classes, after school activities, family and work responsibilities, let alone treatment schedules. Many teens with cancer are unable to leave their homes, drive cars, or attend social activities. Group Loop will serve as a unique place for teens with cancer to "connect" with other teens and forge friendships while battling unwanted aloneness, loss of control and loss of hope associated with the disease (description from site).

    Young Adult Cancer Canada - This is where we "share our sh*t", literally and figuratively.  It's for those who are ready to leave pediatrics or have already gone, but are nowhere near geriatrics. Beware, this isn't only about ranting; while we definitely recognize the importance of a good rant.  The RealTime Cancer Community is all about the open, honest, pursuit of the positive, so all the stories you find here will be from the heart and inspiring (description from site).

    Leukemia Support

    Leukemia and Lymphoma Society - The Leukemia & Lymphoma Society (LLS) is the world's largest voluntary health organization dedicated to funding blood cancer research, education and patient services. The group sponsors live internet chats from 10 a.m. to 5 p.m. with an Information Specialist, provides a peer to peer program that connects patients and parents going through similar circumstances, and also has local chapters in Maryland and all surrounding states.

    National Cancer Institute - This link will send you to the leukemia section of the NCI website.  From there, you can learn more about childhood leukemia, clinical trials, medical statistics and as much literature as you could ever need on the topic.

    Leukemia Research Foundation - The goal of The Leukemia Research Foundation is to "conquer leukemia, lymphoma and myelodysplastic syndromes by funding research into their causes and cures and to enrich the quality of life of those touched by these diseases.  LRK provides information on specific types of leukemia, available clinical trials, as well as opportunities for emotional and financial support.

    Brain Tumors Support

    Pediatric Brain Tumor Foundation - The Pediatric Brain Tumor Foundation (PBTF) is a 501 (c)(3) nonprofit organization dedicated to supporting the search for the cause of and cure for childhood brain tumors. As the world's largest nongovernmental source of funding for childhood brain tumor research, they’re dedicated to not only eradicating this disease, but to providing support to families (description from site).  The site offers an online conference series for parents about different elements of the illness including sibling stress, risk factors, school re-entry and much more.

    National Brain Tumor Society - The National Brain Tumor Society offers top-notch resources and caring support for everyone affected by brain tumors. They offer hope to patients, families, and caregivers during every stage of the treatment journey (description from website).  The organization also offers a program to put current patients in contact with survivors who can relate to what is going on and offer hope for the future.

    Children's Brain Tumor Foundation - This organization works to improve the treatment, quality of life and the long term outlook for children with brain and spinal cord tumors through research, support, education, and advocacy to families and survivors (description from site).  Also offers a Parent to Parent support network as well as online conference and support information.

    Blood Disorders Support

    Aplastic Anemia and MDS International Foundation, Inc. - The Aplastic Anemia & MDS International Foundation is an independent nonprofit organization whose mission is to support patients, families, and caregivers coping with Aplastic Anemia, Myelodysplastic Syndromes, Paroxysmal Nocturnal Hemoglobinuria, and related bone marrow failure diseases.  They also provide educational materials, medical information, and access to peer support via a global network of volunteers who offer hope to those struggling with bone marrow failure diseases (description from site).

    National Heart Lung and Blood Institute - The Institute plans, conducts, fosters, and supports an integrated and coordinated program of basic research, clinical investigations and trials, observational studies, and demonstration and education projects. Research is related to the causes, prevention, diagnosis, and treatment of heart, blood vessel, lung, and blood diseases; and sleep disorders. The NHLBI plans and directs research in development and evaluation of interventions and devices related to prevention, treatment, and rehabilitation of patients suffering from such diseases and disorders.

    Medline Plus - This link will direct you to the section on Blood and Blood Disorders.  It contains a variety of information including an overview, treatments, educational games, research, and sections on children and teenagers.

    Blood Typing Game - In this game, three patients need blood transfusions, and it is up to you to pick the right type of blood to give them!  This educational game is perfect for teaching kids the difference in blood types.

    Lymphoma Support

    The Leukemia and Lymphoma Society - The Leukemia & Lymphoma Society (LLS) is the world's largest voluntary health organization dedicated to funding blood cancer research, education and patient services (description from site).  The organization provides a live chat 10a.m. to 5 p.m. Monday through Friday for patients and parents to talk to an Information Specialist.  In addition to having a Peer to Peer network to connect patients and parents as well, they also have local chapters in Maryland and surrounding states.

    The Lymphoma Research Foundation - On this Web site you will find valuable information about the different types of lymphoma.  Here you can also learn about the latest research findings and get help searching for clinical trials that relate to your condition. The Lymphoma Support Network can help you connect with a peer who is also living with lymphoma or you can find out how to volunteer at an LRF chapter near you (description from site).  They also provide a youth webcast and podcast series related to the illness.

    Lymphoma Information Network - The Lymphoma Information Network provides a great detail of information about leukemia, but also provides a fantastic social network for the patients and their families.  Find support groups, ask a question, use the forums - interact with others who are having similar experiences to your own.

    Sarcoma Support

    The Sarcoma Foundation of America - The SFA eliminates pains and suffering due to sarcoma by funding research, advocating for increased government funding, increasing public awareness, education patients, and making clinical trials available to those who need it.

    Sarcoma Alliance - The Sarcoma Alliance strives to extend and improve the lives of sarcoma patients through accurate diagnosis, improved access to care, education, and support (description from site).  Key features of this group include a live 24/7 support chat room, and online specialist, support centers in MD, PA and DC, a peer to peer network, financial assistance and links to sites to connect young patients together.

    NorthWest Sarcoma Foundation - The Northwest Sarcoma Foundation goal is to create and actively participate in the direction of a national alliance with other sarcoma foundations and affiliated groups guiding a coalition among private and public concerns furthering research for a cure of sarcomas.  Although this organization is more directed towards the Northwest states, the information contained in it is pertinent to all patients.

    Financial Aid

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    Resource to Families

    These links are provided as a resource to families; Casey Care Foundation does not endorse and of these sites or vouch for their credibility.

    Pediatric Oncology Resource Center - The resource center contains an incredible amount of links for financial aid, government help, drug reimbursement, credit counselor, and insurance help and more.

    Partnership for Prescription Assistance - 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. Many will get them free or nearly free. Its mission is to increase awareness of patient assistance programs and boost enrollment of those who are eligible (description from site).

    Rx Hope - RxHope is exactly what its name implies -- a helping hand to people in need in obtaining critical medications that they would normally have trouble affording. We act as your advocate in making the patient assistance program journey easier and faster by supplying vital information and help (description from site).

    RxAssist - Patient assistance programs are run by pharmaceutical companies to provide free medications to people who cannot afford to buy their medicine.  RxAssist offers a comprehensive database of these patient assistance programs, as well as practical tools, news, and articles so that health care professionals and patients can find the information they need (description from site).

    National Human Genome Research Institute - This page provides financial assistance information, including advice on finding assistance with paying for medical care and procedures, treatments, medications, insurance issues and also in finding clinical trials.

    Kids Health - The Financial Management During Crisis page provides a guide to spotting financial trouble early and figuring out ways to deal with it.  Includes advice on understanding the health care system, negotiating prices, and reducing your expenses.

    Medline Plus - The Financial Assistance page provides a variety of links pertaining to funding for certain medical conditions, looking for clinical trials, paying for lodging and travel and much much more.

    Angel Flight East - Angel Flight East provides free air transportation to children and adults in need of medical treatment far from home.  Volunteer pilots use their own airplane and pay for all costs of a flight, making it completely free to the passenger every time.  AFE covers a 14 state territory from Virginia to Ohio to Maine and for destinations beyond that, we link up with other volunteer pilot organizations. 

    Insurance

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    Largest Health Insurance Companies By Plan Members (Maryland Health Care Commission, 2008)

    1. CareFirst Blue Choice (CareFirst Blue Cross Blue Shield)
    2. Kaiser Permanente
    3. Optimum Choice, Inc.
    4. Aetna
    5. Cigna

    Highest Rated HMO's Based on MHCC Rankings (Maryland Health Care Commission, 2008)

    1. Kaiser Permanente
    2. Cigna
    3. CareFirst Blue Choice (CareFirst Blue Cross Blue Shield)
    4. Maryland - Individual Practice Association
    5. Aetna

    This report also provides rankings for other categories such as PPO's, quality of insurance for specific illnesses, and by patient type.  Click here to view the complete report.

    Maryland Health Care Commission. (2008). 2008 Comprehensive performance report: Commercial HMO, POS, and PPO plans in Maryland. Retrieved January 7, 2009, from http://mhcc.maryland.gov/hmo/compreport.pdf

    How To Buy Health Insurance

    Understanding health insurance can save hundreds or even thousands of dollars.  Today, however, health insurance and confusion often seem to be two sides of the same coin.  You may find yourself asking, "What is the difference between an HMO and a PPO?" or "How can I maximize the use of my deductible?"  The links below should help you to answer those questions.

    Go Health Insurance - Have questions about how a health plan works? Want to see what types of plans are available? Learn the ins and outs of health coverage at the Health Insurance Information Center and find the answers you're looking for (description from site).

    HealthInsurance.info - HealthInsurance.info is designed to help employers get the best health insurance for their employees and to help individuals get the best health insurance for themselves and their dependents (description from site). Ask experts for advice, evaluate your current plan, research providers and much more!

    Agency for Healthcare Research and Quality - Produced by the U.S. Department of Health and Human Services, this guide describes different kinds of health insurance plans and answers common questions. There is a glossary of health insurance terms as well as resources for more information (description from site).

    Ten Tips for Health Care - Provided by the Employee Benefits Security Administration, this list gives helpful advice about how to keep an eye out for good insurance and how to make sure you are getting the most out of the plan you already have.

    Alternative Insurance Providers

    Maryland Children's Health Program - The Maryland Children's Health Program (MCHP) gives full health benefits for children up to age 19, and pregnant women of any age who meet the income guidelines.  MCHP enrollees obtain care from a variety of Managed Care Organizations (MCOs) through the Maryland HealthChoice Program (description from site).  Requirements:  Uninsured, Not qualified for Medicare, younger than 19 years old.

    Maryland Health Insurance Program - MHIP is a state-managed health insurance program for Maryland residents who have been unable to obtain health insurance from other sources. MHIP offers its participants access to both CareFirst BlueChoice HMO and CareFirst Blue Preferred PPO networks (description from site).

    Medicaid - Medicaid is available only to certain low-income individuals and families who fit into an eligibility group that is recognized by federal and state law.  Medicaid does not pay money to you; instead, it sends payments directly to your health care providers.  Depending on your state's rules, you may also be asked to pay a small part of the cost (co-payment) for some medical services (description from site).

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