Resource Directory
International Resources
Contact a Family
helpline@cafamily.org.uk www.cafamily.org.uk
This is a national registered charity in the U.K. that provides support and information to families of disabled children, as well as
children with rare diseases.
Lab Tests Online
labtestsonline.org
Lab Tests Online has been designed to help you, as a patient or family caregiver, to better understand the many clinical lab tests that
are part of routine care as well as diagnosis and treatment of a broad range of conditions and diseases.
Make-a-Wish Foundation International
(800) 965-9474 www.worldwish.org
This foundation grants the wishes of children with terminal or life-threatening illnesses.
International Histiocytosis Organizations
Asociacion Argentina de Histocitosis (A.A.H)
info@aah.org.ar www.aah.org.ar
Ciudad Autonoma de Buenos Aires, Argentina
Langerhans Cel Histiocytose – Belgium
02/6466369 info@lch.be www.lch.be
Belgium
Histiocytosis Association of Canada
(250) 764-6104 histio.canada@shaw.ca www.histiocytosis.ca
Kelowna, British Columbia, Canada L'Association Histiocytose France
,01 60 66 93 77 www.histiocytose.org
France
French Patient Association
Erwachsenen Histiozytose X e.V.
info@ehx-ev.de www.ehx-ev.de
Germany
German Patient Association for Adult Histiocytosis
Histiozytose Hilfe e.V.
www.histiozytose.org
Germany
German Patient Association for Histiocytosis
Artemis Society for Histiocytosis - Greece
,+45 20 453 info@histioartemis.gr www.histioartemis.gr
Greece Greek Patient Association
Histio Israel
smith01@netvision.net.il www.histioisrael.org
Israel
Associazione Italiana Istiocitosi (AIRI)
,041-5340721 sede@istiocitosi.org www.istiocitosi.org
Italy
Italian Patient Association
LCH Patient Association - Japan
www7a.biglobe.ne.jp/~lchkanjakai/
Japan Stichting Langerhans Cel Histiocytose
www.histio.nl
Netherlands
Dutch Patient Association
Asociacion Espanola contra la Histiocitosis (ACHE)
www.histiocitosis.org
Spain
Spanish Patient Association
Histocytosis Research Trust - United Kingdom
,07850 740241 shelley.ross@hrtrust.org www.hrtrust.org
Leeds, United Kingdom
Patient association based in the United Kingdom
National Resources (United States)
Air Care Alliance
(888) 260-9707 mail@aircareall.org www.aircareall.org
United States
The Air Care Alliance is a nationwide association of humanitarian flying organizations dedicated to community service. This includes
a list of companies that will provide free transportation to patients who need it.
American Bone Marrow Donor Registry
(800) 745-2452 jakabmdr@bellsouth.net www.abmdr.org
United States
The ABMDR's mission is to educate and recruit an adequate, viable source of well-informed potential marrow donors and effectively
maintain the associated donor records, and to provide comprehensive assistance to patient and physician throughout the process.American Pain Foundation
(888) 615-7246 www.painfoundation.org
United States
The American Pain Foundation is an organization serving people with pain through information, advocacy, and support.
American Psychosocial Oncology Society
(866) 276-7443 info@apos-society.org www.apos-society.org
United States
The APOS has a toll-free Helpline for people with cancer and their caregivers to obtain a local referral for counseling and other
support services to manage cancer-related distress.
American Red Cross
(800) 733-2767 www.redcross.org
United States
Health & Safety Training, youth programs and more. They can also help contact your overseas military family in case of
emergencies. Please contact your local chapters for more information.
American Society of Hematology
(202) 776-0544 www.hematology.org/Patients
United States
Links to blood disease resources and related publications, with abstract search.
Angel Flight
(888) 426-2643 info@angelflightwest.org www.angelflight.org
United States
AFA provides access for people in need seeking free air transportation to specialized health care facilities or distant destinations due
to family, community or national crisis.
Association of Oncology Social Work
(215) 599-6093 info@aosw.org www.aosw.org/
United States
These services are designed to assist individuals, families, groups, and communities through counseling, stress and symptom
management, care planning, case management, system navigation, education and advocacy. Association of Pediatric Oncology Social Workers
info@aposw.org www.aposw.org
United States
The mission of APOSW is to advance practice, extend knowledge and influence pediatric oncology policies and programms in order
to enhance the emotional and physical well being of children with cancer and their families.
Bear Necessities Pediatric Cancer Foundation
(866) 309-2327 office@bearnecessities.org www.bearnecessities.org
United States
Bear Necessities Pediatric Cancer Foundation is a national organization dedicated to eliminating pediatric cancer and providing hope
and support to those who are touched by it.
Bereaved Parents of the USA
(708) 748-7866 info@bereavedparentsusa.org www.bereavedparentsusa.org
United States
The BP/USA offers support, understanding, encouragement and hope to other bereaved parents, siblings and grandparents after the
death of their children, brother, sister or grandchildren.
Beyond the Cure
(800) 532-6459 survivorship@theNCCS.org www.beyondthecure.org
United States
The mission of Beyond the Cure is to help childhood cancer survivors integrate the cancer experience into their new life as survivors
and successfully handle the challenges that are ahead of them and to celebrate survivorship.
BloodLine
(434) 817-2010 www.bloodline.net
United States
Online resource exclusively dedicated to the fields of hematology and oncology.
BMT InfoNet
(888) 597-7674 help@bmtinfonet.org www.bmtinfonet.org
United States
Blood & Marrow transplant information network. CancerCare
(800) 813-4673 info@cancercare.org www.cancercare.org
United States
CancerCare is a non-profit organization whose mission is to provide free, professional support services to anyone affected by
cancer: people with cancer, caregivers, children, loved ones, and the bereaved.
Candlelighters - American Childhood Cancer Organization
(800) 366-2223 staff@acco.org www.candlelighters.org
United States
Candlelighters mission is to provide information and awareness for children and adolescents with cancer and their families, to
advocate for their needs, and to support research so every child survives and leads a long and healthly life.
Chai Lifeline
(877) 242-4543 x3 info@chailifeline.or www.chailifeline.org
United States
When serious illness strikes a child, the entire family is affected. Chai Lifeline's extensive network of free programs and services is
designed to help every member of the family cope during this time of crisis.
Children's Health Insurance Program (CHIP)
(877) 543-7669 insurekidsnow.gov
United States
The Children's Health Insurance Program (CHIP) is a state and federal partnership that provides low-cost health insurance coverage
for children in families who earn too much income to qualify for Medicaid but cannot afford to purchase private health ins.
Children's Oncology Camping Association International
(888) 999-2267 www.cocai.org
United States
Children's Oncology Camping Association International, C.O.C.A., is an international assembly of people providing camping
programs for children with cancer.
ClinicalTrials.gov
http://www.clinicaltrials.gov/ct2/results?cond=%22Histiocytosis%22
United States
Search all ongoing clinical trials from the NIH related to histiocytosis. Compassionate Friends
(877) 969-0010 Nationaloffice@compassionatefriends.org www.compassionatefriends.org
United States
This is a national nonprofit, self-help support organization that assists families toward the positive resolution of grief following the
death of a child of any age.
Disability.gov
www.disability.gov
United States
Disability.gov is an award-winning federal Web site that contains disability-related resources on programs, services, laws and
regulations to help people with disabilities lead full, independent lives.
Drug Watch
(800) 452-0949 www.drugwatch.com
United States
Offers visitors free and accurate information to aid in the understanding of various medications and conditions.
ECD Global Alliance
support@erdheim-chester.org www.erdheim-chester.org
United States
An organization comprised of ECD patients and their caregivers from around the world. Their mission is to provide support to ECD
patients and their loved ones, raise awareness of ECD, and promote research that will help those affected by ECD.
Foraldraforeningen for barn med Histiocytos
(073) 350-7572 info@histiocytos.se www.histiocytos.se
United States
Swedish Patient Association
Gilda's Club
(888) 445-3248 info@gildasclub.org www.gildasclub.org
United States
Gilda's Club is a special place where the focus is on living with cancer. And where men, women, and children with any kind of
cancer and their family members and friends can plan and build life-changing emotional and social support. Give Kids the World
(800) 995-5437 dream@gktw.org www.gktw.org
United States
Nonprofit organization that provides cost-free visits to Central Florida attractions and Give Kids the World Village.
Immunization Action Coalition
(651) 647-9009 admin@immunize.org www.immunize.org
United States
Presents straightforward information about vaccine-preventable diseases and their vaccines. This site also has links to VISs,
immunization and disease statistics, state immunization laws, state health department websites, and other topics.
Insure Kids Now
(877) 543-7669 www.insurekidsnow.gov
United States
Your state, and every state in the nation, has a health insurance program for infants, children, and teens. The insurance is available
to children in working families, including families that include individuals with a variety of immigration status.
Kimberly-Clark Child Face Masks
(800) 524-3577 respiratory.etiquette@kcc.com
http://www.kchealthcare.com/productpromosite/disney/www/Index.asp?action=Main
United States
A nose and mouth mask designed for small faces. Mask features Disney characters to help encourage children to wear them.
Lifeforce Cryobanks
(800) 869-8608 info@lifeforcecryobanks.com www.lifeforcecryobanks.com
United States
Lifeforce Cryobanks, a division of Lifeforce Cryobank Sciences, Inc., is one of the most trusted names in private storage and public
donation of cord blood stem cells. Licensed in NY, NJ, and CA.
LIHEAP Campaign for Home Energy Assistance
(202) 429-8855 info@liheap.org www.liheap.com
United States
The Low Income Home Energy Assistance Program (LIHEAP) helps pay the winter heating bills or summer cooling bills of lowincome and elderly people. Make-a-Wish Foundation of America
(800) 722-9474 www.wish.org
United States
Grants the wishes of children with terminal or life-threatening illnesses.
MedlinePlus
custserv@nlm.nih.gov http://www.nlm.nih.gov/medlineplus/
United States
Quick search of medical literature from 1992 to present or the cancer literature from 1975 to present.
MedlinePlus - Medical Dictionary
http://www.nlm.nih.gov/medlineplus/mplusdictionary.html
United States
Search for definitions of medical terms.
National Children's Cancer Society
(314) 241-1996 www.nationalchildrenscancersociety.com
United States
Provides financial assistance, advocacy, emotional support and education.
National Family Caregivers Association
(800) 896-3650 info@thefamilycaregiver.org www.nfcacares.org
United States
The National Family Caregivers Association (NFCA) educates, supports, empowers and speaks up for the more than 50 million
Americans who care for loved ones with a chronic illness or disability or the frailties of old age.
National Fuel Funds Network
(202) 824-0660 www.nationalfuelfunds.org
United States
NFFN (National Fuel Funds Network) members such as community-based organizations, local government agencies, and utility
partners raise and distribute money for bill-payment assistance in neighborhoods across the country. National Institute of Neurological Disorders and Stroke
(800) 352-9424 www.ninds.nih.gov
United States
The mission of NINDS is to reduce the burden of neurological disease - a burden borne by every age group, by every segment of
society, by people all over the world.
National Institutes of Health (Outreach and Education)
(301) 402-9612 NIHinfo@od.nih.gov http://www.nih.gov/about/outreach.htm
United States
The National Institute of Health (NIH) Outreach and Education communications offices provide information on NIH programs and
activities to the public, scientific community, medical profession, and the media.
National Marrow Donor Program - Patient Advocacy
(888) 999-6743 patientinfo@nmdp.org http://www.marrow.org/PATIENT/
United States
The National Marrow Donor Program Office of Patient Advocacy is here to help. On this Web site, you can find information to help
you: Talk with your doctor, choose a transplant center, answer questions about caregiving, prepare for life after transplant.
National Organization for Rare Disorders (NORD)
(800) 999-6673 www.rarediseases.org
United States
Federation of voluntary health organizations dedicated to providing information on the prevention, treatment, and cure of rare
"orphan" diseases.
National Pain Foundation
www.nationalpainfoundation.org
United States
An on-line educational and support community for persons in pain, their families and physicians. Your source for treatment options
and pain information that is peer reviewed by leading pain specialists.
National Patient Travel Center
(800) 296-1217 info@nationalpatienttravelcenter.org www.patienttravel.org
United States
Servicing to make referrals and provide "how to get there" assistance for any patient needing to travel to a distant specialized
medical facility for evaluation, diagnosis or treatment. Northwest Regional Spinal Cord Injury System - SSDI/SSI Info
http://sci.washington.edu/info/forums/reports/ssdi&ssi.asp
United States
Navigating the System: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). Information from the
NW Regional Spinal Cord Injury System
Office of Rare Diseases Research (ORDR)
(301) 402-4336 ordr@od.nih.gov http://rarediseases.info.nih.gov/Default.aspx
United States
The Office of Rare Diseases Research (ORDR) at the National Institute of Health (NIH) coordinates research and information on rare
diseases at the NIH and for the rare diseases community.
Partners Against Pain
(800) 877-5666 www.partnersagainstpain.com
United States
Partners Against Pain® is an alliance of patients, caregivers, and healthcare providers working together to alleviate unnecessary
suffering by leading efforts to advance standards of pain care through education and advocacy.
Partnership for Prescription Assistance
(888) 477-2669 www.pparx.org
United States
Organization that helps uninsured or low-income patients obtain low-cost or free brand-name medications.
Patient Advocate Foundation
(800) 532-5274 www.patientadvocate.org
United States
National non-profit organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to
resolve insurance, job retention and/or debt crisis matters relative to their diagnosis.
Project Sunshine
(212) 354-8035 www.projectsunshine.org
United States
Project Sunshine is a nonprofit organization that provides free social, educational and recreational programs to children and families
affected by medical challenges. Rainbows
(800) 266-3206 info@rainbows.org www.rainbows.org
United States
Rainbows, the world's largest grief-support organization, is an international non-profit organization that fosters emotional healing
among children grieving a loss from a life-altering crisis.
Ronald McDonald House Charities
(630) 623-7048 info@rmhc.org rmhc.org
United States
Provides low-cost, temporary housing for children and their families while undergoing treatment. Website includes listing of
international locations.
Shadow Buddies
(913) 642-4646 www.shadowbuddies.org
United States
Shadow Buddies are condition-specific dolls designed to be a friend "just like me" for seriously ill or medically challenged children.
Provide comfort to children, as well as effective method for educating newly-diagnosed children.
Social Security Administration
(800) 772-1213 www.ssa.gov
United States
Social Security and Disability Resource Center
contact@ssdrc.com www.ssdrc.com
United States
The Social Security and Disability Resource Center website provides information on the federal government's two disability benefit
programs, title II social security disability benefits and title 16 SSI disability benefits.
Social Security Disability Benefits
www.socialsecuritydisability.ws/index.html
United States
SocialSecurityDisability.ws is a national service with Social Security Disability attorneys, lawyers and advocates helping individuals
apply for Social Security benefits in each state. SS/Disability Information from the Nat'l. MS Society
www.nationalmssociety.org/government-affairs-and-advocacy/government-programs/social-security-disability/index.aspx
United States
Although this is from the Nat'l. MS Society, their website has useful information regarding the Social Security Disability process. They
also provide a helpful guidebook and sample letters from physicians to assist you in the application process.
Starlight Children's Foundation
(310) 479-1212 info@starlight.org www.starlight.org
United States
Starlight Children’s Foundation is dedicated 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.
Super Sibs
(888) 417-4704 info@supersibs.org www.supersibs.org
United States
Super Sibs mission is to honor,support and recognize brothers and sisters of children with cancer and their goal is to reach out to the
brothers and sisters of over 12,600 children in the U.S. and Canada who are diagnosed with cancer each year.
The Bone Marrow Foundation
(800) 365-1336 TheBMF@BoneMarrow.org www.bonemarrow.org
United States
The Bone Marrow Foundation website will provide you with financial assistance resources, information, programs and services about
bone marrow/stem cell transplantation you need whether you are a patient, family member, friend, bone marrow donor or doctor.
Viacord - Sibling Cord Blood Transplant Program
(866) 861-8435 info@viacord.com http://www.viacord.com/special-transplant-programs.htm
United States
This program provides ViaCord's comprehensive cord blood collection, processing and five years of storage at no cost to expecting
parents who have a child in need of a transplant and meet the other enrollment requirements of the program. State Resources (United States)
Alabama Department of Human Resources
(334) 242-1310 www.dhr.state.al.us
Montgomery, Alabama, United States
The following programs are offered through the Department of Human Resources: Temporary assistance for needy families; general
assistance; food stamps; childcare.
Alabama Department of Public Health
800) 252-1818 www.adph.org
Montgomery, Alabama, United States
The following programs are offered through the Department of Public Health: Social services; family assessment needs; family care;
and child treatment.
Alabama State Employee Insurance Board
(866) 836-9737 www.alseib.org
Montgomery, Alabama, United States
Administering Health Benefits with excellence.
Chronic and Acute Medical Assistance (CAMA)
(800) 780-9972 dpapolicy@alaska.gov hss.state.ak.us/dhcs/CAMA
Alaska, United States
Health Care Services - Case Management Services
www.hss.state.ak.us/dhcs/medicaid_medicare/caseman_medicaid.htm
Alaska United States Alaska Medicaid, through their contractor Qualis Health, provides case management services designed for
patients with serious illnesses, injuries, and some chronic conditions.
Health Care Services Alaska - Denali KidCare
(888) 318-8890 denali.kid.care@alaska.gov www.hss.state.ak.us/dhcs/DenaliKidCare/default
Anchorage, Alaska, United States
Denali KidCare is a State of Alaska program designed to ensure that children and teens of both working and non-working families
can have the health insurance they need. Heating Assistance Program (HAP) – Alaska
(800) 470-3058 liheap@alaska.gov www.hss.state.ak.us/dpa/programs/hap
Juneau, Alaska, United States
Apply for financial assistance for heating and utilities.
State of Alaska Health and Social Services
(907) 465-3030 hss.state.ak.us/
Juneau Alaska United States
To promote and protect the health and well being of Alaskans.
Arizona Consortium of Children with Chronic Illness (ACCCI)
(480) 557-8445 accci@qwestoffice.net www.accci-az.org
Tempe, Arizona, United States
The Arizona Consortium for Children with Chronic Illness (ACCCI) is dedicated to improving the quality of life for chronically ill
children and their families through advocacy and education.
Arizona Life Lines
(888) 543-5637 june@arizonalifelines.com www.arizonalifelines.com
Arizona, United States
Helps find insurance for patients with pre-existing conditions
Office for Children with Special Health Care Needs - Arizona
(602) 542-1860 www.azdhs.gov/phs/ocshcn
Phoenix, Arizona, United States
To continuously improve comprehensive systems of care that enhances the health, future and quality of life for children and youth
with special health care needs and their families
Connecticut State Office of Rural Health
(860) 738-6378 www.ruralhealthct.org
Winsted, Connecticut, United States
Working together to promote the health of persons living in rural Connecticut through education, communication and partnerships. United Way 2-1-1
(860) 571-7500 infoline@ctunitedway.org www.infoline.org
Rocky Hill, Connecticu, United States
2-1-1’s Health Care Resource Guide is intended to provide information on state, federal and privately purchased health insurance
programs for Connecticut residents.
Kelly Anne Dolan Memorial Fund - Delaware
(215) 643-0763 www.dolanfund.org
Delaware, United States
The Kelly Anne Dolan Memorial Fund provides advocacy, education, information and financial assistance for the uninsured needs of
families caring for terminally, critically and chronically ill, seriously disabled or severely injured children.
Children's Medical Services
(850) 245-4200 www.cms-kids.com
Florida, United States
The Children's Medical Services (CMS) program provides children with special health care needs with a family centered, managed
system of care
Florida KidCare
(888) 540-5437 www.floridakidcare.org
Florida, United States
KidCare is Florida’s children’s health insurance program for uninsured children under age 19. It is made up of four parts: MediKids,
Healthy Kids, and Children’s Medical Services Network for children with special health care needs, and Medicaid for kids
LifeNet Georgia
(877) 957-5500 www.lifenetsc.net
Georgia, United States
The mission of LifeNet is to provide safe, quality air medical service and patient care to the critically ill and injured.
Children's Hospital of Michigan - Kids Health Library
(313) 745-5437 www.childrensdmc.org/kidshealth
Michigan, United States
Educational and recreational activities for children and teens. Catastrophic Illness in Children Relief Fund
(800) 335-3863 www.state.nj.us
Trenton, New Jersey, United States
The Catastrophic Illness in Children Relief Fund is intended to assist in preserving a family's ability to cope with the responsibilities
which accompany a child's significant health problems.
Kelly Anne Dolan Memorial Fund - New Jersey
(215) 643-0763 www.dolanfund.org
New Jersey, United States
The Kelly Anne Dolan Memorial Fund provides advocacy, education, information and financial assistance for the uninsured needs of
families caring for terminally, critically and chronically ill, seriously disabled or severely injured children.
NJ Dept. of Human Services - State Subsidies for Childcare
(800) 332-9227 www.state.nj.us/humanservices/dfd/programs/child/subsidies/
New Jersey, United States
Low- and moderate-income working parents can receive state subsidies for child care, including preschool instruction, after-school
programs for children up to age 13, and care for children and teens with special needs.
NJ Family Care
(800) 701-0710 www.njfamilycare.org
Trenton, New Jersey, United States
NJ FamilyCare is not a welfare program, but rather the State of New Jersey's way of providing affordable health coverage for kids
and certain low-income parents.
Famliy Health Plus - New York Dept. of Health
(877) 934-7587 dohweb@health.state.ny.us http://www.health.ny.gov/health_care/family_health_plus/
Albany, New York, United States
Family Health Plus provides comprehensive coverage, including prevention, primary care, hospitalization, prescriptions and other
services.
New York State Hospital Report Card
(716) 250-6472 questions@nhqc.com www.myhealthfinder.com
Williamsville, New York, United States
Myhealthfinder.com is a project reporting on quality of care and providing ratings for every New York State hospital on a wide array of
procedures and conditions. Family Support Program of North Carolina
(800) 852-0042 FSP.CDR@unc.edu fsp.unc.edu
Chapel Hill, North Carolina, United States
Family Support Network of North Carolina promotes and provides support for families with children who have special needs.
StarShine Hospice - Cincinnati Children's
(513) 636-7152 starshine@cchmc.org www.cincinnatichildrens.org/svc/alpha/s/hospice
Cincinnati, Ohio, United States
The StarShine Hospice staff at Cincinnati Children's Hospital Medical Center provide various services to patients and families in
cooperation with your child's family and under the direction of your child's physician.
Child Life, Education and Creative Arts Therapy - CHOP
(215) 590-2001 http://www.chop.edu/service/child-life-education-and-creative-arts-therapy
Pennsylvania, United States
The goal of the Oncology Child Life, Education and Creative Arts Therapy program is to help children and families cope with the
emotional stress and anxiety associated with cancer therapy and treatment.
Kelly Anne Dolan Memorial Fund - Pennsylvania
(215) 643-0763 www.dolanfund.org
Ambler, Pennsylvania, United States
The Kelly Anne Dolan Memorial Fund provides advocacy, education, information and financial assistance for the uninsured needs of
families caring for terminally, critically and chronically ill, seriously disabled or severely injured children.
LifeNet South Carolina
(800) 327-2611 www.lifenetsc.net
South Carolina, United States
The mission of LifeNet is to provide safe, quality air medical service and patient care to the critically ill and injured
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