Hemophagocytic Lymphohistiocytosis (HLH) Resources
For Parents and Caregivers
Patient-family education materials provide educational information to help individuals and families facing childhood cancer.
This book provides clear explanations and practical advice for children ages 6-12 through warm and funny illustrations to help them make sense of cancer and its treatment.
This guide addresses the way that the surgery, radiation, and chemotherapy used to cure childhood cancers can affect growing bodies and developing minds.
This illustrated healing guide introduces the technique of visualization. It offers children with cancer an effective way to deal with anxiety, pain, fear and the many other challenges.
This is a story of a 9-year-old who has always enjoyed wearing hats. But when she loses her hair from cancer treatments, suddenly hats aren't so much fun anymore.
Shelter From The Storm is a compassionate road map to what families of children with life-threatening conditions may have to face.
In this book, five teens with cancer, their families and best friends are interviewed about the effects the disease has had on their lives.
Your Child in the Hospital is a practical book of tips and wisdom from veteran parents that will help make any hospital stay easier.
Camp Mak-A-Dream offers sessions for cancer patients and their siblings. It's located in Gold Creek, Montana.
It's a kosher camp for children with cancer and other life-threatening illnesses, located on 125 acres in Glen Spey, New York. The camp is one of the many services provided by Chai Lifeline.
This camp provides respite, professional counseling and recreational opportunities for families facing the physical, emotional and financial strain of a child with a critical illness.
This is an overnight camp for kids with cancer and their siblings. It's run by CHOP's Oncology division staff, and provides 24-hour on-site medical coverage.
Hair Club for Kids provides free hair restoration for children battling hair loss as a result of illness.
It provides hats with human or synthetic hair attached for girls with hair loss due to chemotherapy.
Locks of Love offers hairpieces to financially disadvantaged children who are suffering from long-term medical hair loss from any diagnosis.
Wigs for Kids is a non-profit organization that provides wigs and accepts hair donations.
Support and Education Groups
Provides a safe and supportive environment dedicated to providing support, education and hope to people affected by cancer.
It offers support groups, lectures, workshops and social events as a supplement to medical care in a warm and welcoming home-like setting.
2bme is home to a collection of short articles for teens with cancer. Topics include handling non-medical issues like diet, body image and relationships.
The American Childhood Cancer Organization® is the largest publisher and distributor of free childhood cancer books in the country.
The American Society of Clinical Oncology (ASCO) is the voice of the world’s cancer physicians. ASCO’s patient information website (Cancer.Net) brings the expertise and resources of ASCO to people living with cancer and those who care for and care about them.
Cancer Hope Network provides free and confidential one-on-one emotional support to cancer patients, their caregivers, and their family members.
The Cancer Survivors Network of the American Cancer Society offers discussion boards and chatrooms where you can meet your CSN "neighbors" and develop friendships.
A non-profit organization providing college scholarships and prosthetics to benefit people diagnosed with cancer, receiving treatment for cancer or in remission.
It lets you create a free website that acts as a virtual diary of your child's cancer experience. Update it at anytime, from anywhere, to keep your family and friends up to date.
It offers support to those who find themselves in the most challenging situation of their lives — battling a cancer diagnosis and undergoing treatment.
Helps teens with cancer navigate their chemotherapy treatments through education and by fostering connections with others through blogging and chat rooms.
Critical Mass is a coalition of organizations which have the collective goal to improve survival rates and quality of life for young adults with cancer.
Offers young adult cancer fighters and survivors a free outdoor adventure experience designed to empower them to climb, paddle and surf beyond their diagnosis.
Group Loop provides online support, information and resources for teens living with cancer and their families.
Headcovers Unlimited has hats, turbans and wigs for hair loss and cancer patients.
The Histiocytosis Association is a global nonprofit organization dedicated to addressing the unique needs of patients and families dealing with the effects of histiocytic disorders.
Is a one-on-one cancer support service that connects a person fighting cancer with a survivor who has beaten the same type of cancer.
Lotsa Helping Hands lets you create a free, private, online community to organize family, friends, neighbors and colleagues during times of need.
It offers live and archived webinars, interactive discussions on topics related to grief, written resources and additional websites, and online activities for children, teens and families.
The mission of the National Coalition for Cancer Survivorship is to advocate for quality cancer care for all people touched by cancer.
It offers bereavement kits in English and Spanish and valuable reading materials such as After a Loved One Dies, When Families Grieve (Muppets DVD) and more.
OncoLink is a website maintained by the Abramson Cancer Center at the Hospital of the University of Pennsylvania. It features a wide variety of information on adult and pediatric cancers.
Planet Cancer is an online community for people in their 20s and 30s with cancer.
Prepare to Live is the only nonprofit, charitable organization founded and managed by cancer survivors, dedicated to using the power of the Web and documentary-style filmmaking.
Sara's Smiles Foundation provides a variety of resources to entertain, comfort and educate children with cancer.
It's a nonprofit organization dedicated to providing personalized songs for children and teens currently facing tough medical, physical or emotional challenges, free of charge.
It provides entertainment, education and family activities to help children with chronic and life-threatening illnesses to cope with the pain, fear and isolation of prolonged illness.
Team IMPACT is a nonprofit chartered to improve the quality of life for children facing life-threatening illnesses.
It has raised more than $2 million for cancer research at The Children’s Hospital of Philadelphia and has provided assistance and support to countless families and individuals affected by cancer.
It provides free college admissions and financial aid counseling to high-school and college-aged children and their families who are dealing with issues related to pediatric cancer.