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.
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.
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.
NORD – State Health Insurance Information
The Invisible Disabilities Association (IDA) encourages, educates, and connects people and organizations touched by illness, pain, and disability around the globe. IDA also offers resources for information about various illnesses, help with costs of medications, disability benefits, and more.
Travel Assistance
The American Cancer Society’s Road to Recovery Program provides free transportation for cancer patients receiving treatment at a nearby hospital or medical facility.
The Leukemia & Lymphoma Society’s (LLS) Susan Lang Pay-It-Forward Patient Travel Assistance program is available to blood cancer patients.
Mercy Medical Angels provide both air and ground transportation support for patients in need of specialized medical care outside their local region.
New Directions provides high-quality local, national, and international travel vacations and holiday programs for people with mild to moderate developmental disabilities.
Patient AirLift Services arranges free air transportation based on the need for individuals requiring medical care and for other humanitarian purposes.
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.
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.
The Leukemia & Lymphoma Society’s (LLS) is dedicated to funding blood cancer research and providing education and patient services.
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 is a vocal advocate to promote public and professional education, patient and family support, and stimulation and support of research.
Histio UK is dedicated to promoting scientific research to uncover the causes of histiocytic diseases and ensure early diagnosis, effective treatment, and a cure.
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.
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.
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.
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.
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.
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
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.
The Patient Advocate Foundation (PAF) provides professional case management services to Americans with chronic, life-threatening, and debilitating illnesses.
Eurordis offers video tutorials on how to find quality information on the internet for rare diseases.
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.
The Academy of Nutrition and Dietetics (formerly the American Dietetic Association) provides accurate information and various resources about nutrition, wellness, and related areas.
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.
Additional information about ECD to share with others from the U.S. National Library of Medicine: Erdheim-Chester Disease.
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
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