Resources
Resource Materials
These online resources are listed to provide potentially helpful advice and services offered by healthcare companies, nonprofit organizations, and other advocacy groups.
Most of these services are offered to people living in the US. If you know of additional resources that should be listed for the US or other countries, please contact the ECD Global Alliance.
The most recent, expert guidelines for ECD care and treatment can be found at Histiocytic Neoplasms – Guidelines Detail (nccn.org) where you will need to click on ‘NCCN guidelines’. The site requires creation of a free account to access the document, but it is worth the trouble.
In addition, Survivorship Issues in Adult Patients with Histiocytic Neoplasms provides guidance on managing some of the complications and challenges that someone living with ECD may encounter.
ECD medical experts in our community have helped compile two types of brochures for general education and awareness purposes. The patient brochure is available to help new members of the community understand the basics of ECD. The medical brochure is available to share with your care team or any medical professional.
Medication Assistance
Finding a solution to your prescription needs can be challenging. The following list includes drug programs that could possibly help obtain drugs affordably. Please also find payer assistance on our webpage Filing Payer Appeals.
Genentech Access
Offers assistance for the use of Zelboraf (vemurafenib), Cotellic (cobimetinib), and Actemra (tocilizumab).
Novartis Patient Assistance Foundation Enrollment
Offers assistance for the use of Mekinist (trametinib) and Tafinlar (dabrafenib).
KINERET® On TRACK™
Provides assistance with prescription delivery, insurance, and reimbursement; and answers to some of their Kineret-related questions.
NeedyMeds
Is dedicated to helping people who cannot afford medicine or health care costs.
Rx Assistant Programs
Are advocates who work with major drug manufacturing companies to get your medication to you through the patient assistant programs at little to no cost.
RxAssist
Offers a database of patient assistance programs, as well as practical tools, news, and articles so that health care professionals and patients can find the information they need.
Rx Outreach
Is a non-profit pharmacy that works to make medications affordable.
The HealthWell Foundation
Addresses the needs of individuals with insurance who cannot afford their copayments, coinsurance, and premiums for important medical treatments.
Patient Services, Inc. (PSI)
Helps patients living with specific chronic illnesses by locating health insurance, subsidizing the cost of health insurance premiums, providing pharmacy and treatment co-payment assistance, assisting with Medicare Part D Co-insurance, and helping with advocacy for Social Security Disability.
Patient Access Network (PAN)
Helps uninsured people with life-threatening, chronic, and rare diseases obtain medications and treatment.
Insurance and Financial Assistance
Financial and healthcare support may be available through the following sources.
Air Charity Network
Air Charity Network is a charitable organization that provides access for people in need who are seeking free air transportation to specialized health care facilities or distant destinations due to family, community, or national crisis. Air Charity Network serves all 50 states and its volunteer pilots utilize their own aircraft, fuel and time to provide free air transportation to medical facilities for citizens who are financially distressed or otherwise unable to travel on public transportation.
Social Security Disabilitiy
Social Security Disability Insurance (SSDI) or “Disability” provides monthly payments to people who have a disability that stops or limits their ability to work. ECD is on the SSA Compassionate Allowance list that is meant to reduce the waiting time to reach a disability determination.
Medicare-Paying for Senior Care
Understand your financial options for long-term care.
Patient Services, Inc. (PSI)
Helps patients living with specific chronic illnesses by locating health insurance, subsidizing the cost of health insurance premiums, providing pharmacy and treatment co-payment assistance, assisting with Medicare Part D Co-insurance, and helping with advocacy for Social Security Disability.
Hill-Burton Free and Reduced Cost Health Care
Provides services to people who are unable to pay for hospitals, nursing homes, and other health facilities.
The HealthWell Foundation
Addresses the needs of individuals with insurance who cannot afford their copayments, coinsurance, and premiums for important medical treatments.
The Cancer Financial Assistance Coalition
Helps cancer patients by limiting financial challenges, through a broad range of advocacy, communications, and education programs in collaboration with its member organizations.
Cancer Care
Provides professional support services, including counseling and support groups, education, financial assistance, and practical help to anyone affected by cancer. Its services are provided free of charge by professional oncology social workers.
Livestrong Foundation
Works to identify the issues faced by cancer survivors to comprehensively improve the quality of life for members of the global cancer community.
The Leukemia & Lymphoma Society Co-Pay Assistance Program
Assists patients with payment of insurance premiums and co-pay obligations, and the identification of additional sources of financial help.
The National Association of Free Clinics (NAFC)
Focuses on the issues and needs of the more than 1,200 free clinics and the people they serve in the United States.
Need Help Paying Bills
Provides information on assistance programs, charity organizations, and other resources that can help with paying bills, mortgage, and debt expenses.
Travel Assistance
TSA Cares
Is a helpline to assist travelers with disabilities and medical conditions. TSA recommends that passengers call 72 hours ahead of travel for information about what to expect during screening.
Patient AirLift Services
Arranges free air transportation based on the need for individuals requiring medical care and for other humanitarian purposes.
New Directions
Provides high-quality local, national, and international travel vacations and holiday programs for people with mild to moderate developmental disabilities.
Mercy Medical Angels
Provide both air and ground transportation support for patients in need of specialized medical care outside their local region.
The Leukemia & Lymphoma Society’s (LLS)
Susan Lang Pay-It-Forward Patient Travel Assistance program is available to blood cancer patients.
The American Cancer Society’s Road to Recovery Program
Provides free transportation for cancer patients receiving treatment at a nearby hospital or medical facility.
Partner Associations
The following advocacy groups serve either histiocytosis disorders or rare diseases in general and may be of assistance in your journey with ECD.
AAH Asociación Argentina de Histocitosis
An Argentine association that supports patients with histiocytic disorders, promoting awareness, research, and community support.
AIRI Onlus Italy
Is a non-profit association in Italy that supports patients and families affected by rare immunological and histiocytic disorders. They focus on providing assistance, spreading awareness, promoting medical research, and creating a network of solidarity among patients, caregivers, and healthcare professionals.
Artemis Association for Histiocytosis Greece
A Greek organization that supports histiocytosis patients and families while promoting awareness and research.
Associazione Italiana Linfoistiocitosi Emofagocitica – A.I.L.E.
Is an Italian patient advocacy group dedicated to supporting individuals and families affected by Hemophagocytic Lymphohistiocytosis (HLH). They provide information, raise awareness, promote research, and offer guidance to help improve the quality of life for patients and their caregivers.
CHANCE Association (Children Against Cancer)
A patient-focused group that supports children with cancer and rare diseases, raising awareness and funding research to improve care.
Divina Foundation India
An Indian foundation dedicated to supporting histiocytosis patients through care, awareness, and research initiatives.
ECDGA
The Erdheim-Chester Disease Global Alliance connects patients, families, and researchers worldwide, supporting those affected and advancing research on this rare disease.
Eric’s Journey Foundation
A U.S.-based foundation dedicated to supporting families, raising awareness, and advancing research for histiocytic disorders.
Eurordis (Rare Disease Europe)
Their mission is to build a strong pan-European community of patient organizations and people living with rare diseases, to be their voice at the European level.
Família Histiocitose
A Brazilian group that unites families affected by histiocytosis, offering support, information, and advocacy.
Frame Family Foundation
Supports patients and families affected by histiocytic disorders while promoting research and awareness worldwide.
Global Genes
Their mission is to help patients find and build communities, gain access to information and resources, connect to researchers, clinicians, industry, government, and other stakeholders, share data and experiences, stand up, stand out, and become effective advocates on their own behalf.
Histio UK
Is dedicated to promoting scientific research to uncover the causes of histiocytic diseases and ensure early diagnosis, effective treatment, and a cure.
Histiocure Foundation
A foundation working to improve the lives of histiocytosis patients by funding research, raising awareness, and supporting families.
Histiocytosis Association
Is a global nonprofit organization dedicated to addressing the unique needs of patients and families dealing with the effects of histiocytic disorders, that connects patients and medical communities around the world with the resources needed every step of the way while leading the search for a cure.
Histiocytosis Association of Canada
Iis a vocal advocate to promote public and professional education, patient and family support, and stimulation and support of research.
LHF Espoir
Is a French association dedicated to supporting patients and families affected by histiocytic diseases. They work to raise awareness, provide reliable information, encourage research, and create a strong community of solidarity for those facing these rare conditions.
Liam’s Lighthouse
A U.S.-based foundation raising awareness, funding research, and supporting families affected by histiocytic disorders.
National Organization for Rare Disorders
NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
OR Association
Is an advocacy group located in Spain. They fight to improve the quality of life of children and adolescents diagnosed with Langerhans Cell Histiocytosis and their families.
Rare Disease Day
Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
The Leukemia & Lymphoma Society’s (LLS)
Is dedicated to funding blood cancer research and providing education and patient services.
U.S. Pain Foundation
Is an organization created by people with pain for people with pain, U.S. They strive to be the leading source of support for those living with pain, as well as their caregivers and care providers.
General Resources
Educational resources for grief and bereavement
Provide information, guidance, and support to help individuals and families understand the grieving process, cope with loss, and access professional or community-based assistance.
LLS One-On-One Nutrition Consultations
Patients and their care partners may receive a free one-on-one phone consultation with one of LLS’s registered dietitians who have expertise in oncology nutrition. Eating well helps people with cancer feel better, stay stronger, and better tolerate the side effects of treatment. Good nutrition also helps the body replace blood cells and healthy tissues that are damaged as a result of cancer treatment. You can schedule online or call LLS’ Nutrition Education Services Center at 877-467-1936.
Schedule an appointment and learn more here: www.LLSnutrition.org/schedule
Erdheim-Chester Disease.
Additional information about ECD to share with others from the U.S. National Library of Medicine
American Nutrition Association
The American Nutrition Association promotes optimal health through nutrition and wellness education. Educating both laypeople and professionals about the health benefits of nutrition and wellness, with focuses on science-based nutrition.
Academy of Nutrition and Dietetics
The Academy of Nutrition and Dietetics (formerly the American Dietetic Association) provides accurate information and various resources about nutrition, wellness, and related areas.
HealingWell.com
Features a thriving support community, blog, videos, a newsletter, articles, and resources to help patients actively manage the challenges of living with chronic illness.
Eurordis
Offers video tutorials on how to find quality information on the internet for rare diseases.
The Patient Advocate Foundation (PAF)
Provides professional case management services to Americans with chronic, life-threatening, and debilitating illnesses.
The Importance of Influenza Vaccination
The 2017-2018 flu season has been particularly difficult, which is why NIH staff found it important to share the importance of the flu vaccine for Erdheim-Chester patients.
Depression & Anxiety Help
If you feel you may hurt yourself or someone else, call, text, or chat to 988, to reach a crisis counselor at the National Suicide and Crisis Prevention Hotline. 24/7 help. 988 Lifeline
Managing Fatigue, Weakness, and Sleep Problems – American Cancer Society
Provides practical tips and medical guidance to help individuals cope with fatigue, physical weakness, and sleep disturbances during or after cancer treatment. Manage fatigue, weakness, and sleep problems
Coping Mechanisms – Identifying and Replacing Maladaptive Behaviors
Educational resources explaining what maladaptive coping mechanisms are, their impact on mental health, and practical strategies to build healthier coping skills with real-life examples.
Identifying and Managing Distress – American Cancer Society
Provides guidance on recognizing distress related to cancer and offers strategies, tools, and resources to help manage emotional challenges.
Social Isolation and Loneliness – American Cancer Society
Helps individuals recognize signs of social isolation and loneliness during or after cancer, with guidance on coping strategies and where to find support. Social Isolation and Loneliness
Depression and Anxiety Resources – American Cancer Society
Provides educational guidance on recognizing, managing, and coping with depression and anxiety related to cancer, with practical strategies and support options.
Violence Prevention Hotline
A confidential resource for individuals experiencing thoughts of harming others, offering immediate support, counseling, and strategies for prevention. Violence Prevention Hotline
Drug Abuse
Alcohol and other drugs of abuse hotlines and information lines: Drug Helpline
A free, confidential service offering 24/7 support, guidance, and information for individuals and families affected by substance use.
APV-D Resources
Pituitary World News
An online resource providing news, expert insights, and patient stories to raise awareness and understanding of pituitary disorders.
Pituitary World News (search for AVP-D in the search bar to see the lastest news about AVP-D)
Diabetes Insipidus
A private community for people with Arginine Vasopressin Deficiency (AVP-D) or resistance, offering peer support and shared experiences.
Got Diabetes Insipidus? Got Arginine VasoPressin Deficiency or Resistance? (Facebook Group, will need to ask to join)
Pituitary Foundation
Offers guidance on AVP Deficiency (Diabetes Insipidus) treatment, including information on managing symptoms and accessing support.
AVP Deficiency Treatment with a download for Advice For AVPD-DI Patients