We would like to provide special needs families with a forum to offer suggestions and ideas to their peers. If you have discovered a tip or resource that has helped you and your family, please share it here. Contact the Ryan House office: 602. 200.0767 to share your discoveries.
We would also like to share local and national/international resources with families and interested parties. Please note: Please view the Ryan House Privacy Policy relating to third party web sites and links thereto. Ryan House is not responsible for the availability or content of the sites to which it links, nor does Ryan House endorse, warrant or guarantee the products, services or information described or offered at these other Internet sites. Users cannot assume that the external sites will abide by reasonable privacy practices. The resources provided are intended to be references for families and interested parties and may not be comprehensive. If you find contact information that has changed or is incorrect, please e-mail info@ryanhouse.org and let us know.
Local/Arizona Resources
Advocacy
Advocates for the Disabled 5060 N 19th Ave Ste 306 Phoenix, Arizona 85015 www.advocatesforthedisabled.org 602.212.2600Provides disability evaluation services, financial and legal assistance as well as supportive intervention/guidance counseling, psychological and medical evaluations for clients.
American Beginnings 928.783.5794Provides immigration, Visas, applications and general information, partial representation. There is an immigration attorney on staff as well as naturalization and citizenship applications, translation and notary public. Information and referrals about services in the community are available. Based in Yuma, Arizona.
Arizona Consortium for Children with Chronic Illness (ACCCI) 2034 E Southern Ave Suite G Tempe, AZ 85282 www.accci-az.org 480.557.8445ACCCI is dedicated to improving the quality of life for chronically ill children and their families through advocacy and education.
Arizona Government Resources
Arizona Department of Economic Security Division of Developmental Disabilities (DDD) Post Office Box 6123 Phoenix, Arizona 85005 www.azdes.gov/ddd 602.246.0546The services and supports provided by DDD help eligible individuals with developmental disabilities achieve self-sufficiency and independence through home and community services, therapies, and support coordination.
Arizona Department of Health Services Administration 150 North 18th Avenue Phoenix, Arizona 85007 www.azdhs.gov 602.542.1025 602.542.1860Office for Children with Special Health Care Needs 602.532.9960 Arizona Early Intervention Program Provides numerous services for children and their families with special health care needs. The office for Children with Special Health Care Needs (OCSHCN) is found here along with the Arizona Early Intervention program (AzEIP). AzEIP is eligible to children birth to 36 months who are developmentally delayed or who have an established condition, which has a high probability of resulting in delay.
Arizona Health Care Cost Containment System (AHCCCS) 801 E. Jefferson Street, MD 4100 Phoenix, AZ 85034 www.ahcccs.state.az.us 602.417.5010Arizona’s Medicaid health insurance program. Call AHCCCS for an application or for help filling out an application.
Parent Information Network Specialists Arizona Department of Education 1535 West Jefferson Street Phoenix, Arizona 85007 www.ade.az.gov/ess/specialprojects/pinspals 1.877.230.PINS (7467)These specialists work for the Arizona Department of Education and provide Support for Families Throughout the Special Education Process.
Bereavement and Grief
The Compassionate Friends of The Valley of the Sun P.O. Box 50523 Phoenix, AZ 85076 www.tcfphoenix.org/ 602.841.8649The mission of The Compassionate Friends is to assist families toward the positive resolution of grief following the death of a child at any age and to provide information to help others be supportive. The organization is a national nonprofit, self-help organization with over 600 local chapters in the United States and many other chapters worldwide. The Compassionate Friends offers local meetings and support.
Dottie Kissinger Children’s Bereavement Camp Banner Hospice 1325 N. Fiesta Blvd., Suite 1 Gilbert, AZ 85233 www.bannerhealth.com/Locations/Arizona/Banner+Hospice/Bereavement+Camp/_Bereavement+Camp.htm 480.503.9676Sponsored by Banner Hospice, the Dottie Kissinger Children’s Bereavement Camp is a free community service designed to help children cope with the loss of a loved one. Children and parents participate in activities that inform, educate, and provide opportunities to talk about very difficult aspects of loss, with the goal of the camp to help families heal.
M.I.S.S. Foundation P.O. Box 5333 Peoria, Arizona 85385-5333 www.missfoundation.org 1.888.455.MISS (6477)The MISS Foundation is a non-profit, volunteer based organization committed to providing crisis support and long term aid to families after the death of a child from any cause. Along with providing support groups and forums, MISS also participates in legislative and advocacy issues, community engagement and volunteerism, and culturally competent, multidisciplinary, education opportunities.
New Song Center for Grieving Children 6947 E. McDonald Drive Scottsdale, AZ 85253 www.thenewsongcenter.org (480) 951-8985New Song Center provides a support group program for grieving children, youth, young adults and their families following the death of a loved one. New Song Center also provides comprehensive grief education for our volunteers, the community and professionals.
Stepping Stones of Hope 4000 North 7th Street, Suite 108 Phoenix, Arizona 85014 www.steppingstonesofhope.org 602.264.7520Provides support for grieving families to help bereaved children become healthy, well-adjusted adults and support for adults in a child’s life to learn skills to navigate their own grief journey as well as build family cohesion.
Camps
Camp Rainbow Phoenix Children’s Hospital 1919 East Thomas Road Phoenix, AZ 85016 www.phoenixchildrens.com/medical-specialties/center-for-cancer-blood-disorders 602.546.0920This Camp is a Community Outreach program through the Center for Cancer & Blood Disorders at Phoenix Children’s Hospital and is held once a year for children ages 7-18 who are being treated for cancer or have been treated for cancer.
Camp Soaring Eagle 6586 State Route 179, Suite B2 Sedona AZ 86351 www.campsoaringeagle.org 702.408.7326Located in Sedona, AZ, Camp Soaring Eagle welcomes children from Arizona, Nevada, New Mexico and Utah and provides a special place, completely free of charge to the campers and their families, where children living with life-threatening diseases can forget about their illness and play like kids in a medically safe environment.
Condition Specific Organizations
AIDS Project Arizona www.thinkhiv.org/dp/node/43 877.467.2307Provides support services and educational services to people with HIV/AIDS. Some services include: food pantry, financial assistance, legal clinic, Camp Hakuna Matata and more.
American Cancer Society – Phoenix 4550 E Bell Rd Ste 126 Phoenix, AZ 85032 www.cancer.org 602.224.0524Provides support groups and education for all cancer patients and families. Also includes the Cancer Resource Network that provides access to: Information for you and your family; Helpful guidance for day-to-day life; Caring emotional support.
Arizona Chapter of the Cerebral Palsy Network http://arizona_cpinfoshare.tripod.com/The AZ Chapter of the Cerebral Palsy Network provides information and resources to everyone in Arizona who is dealing with Cerebral Palsy or related diagnoses by joining together as care-givers, parents, teens and adults with CP, medical professionals, & educators.
Arizona Spinal Cord Injury Association 5025 E Washington St #110 Phoenix, AZ 85034 www.azspinal.com 602.507.4209The Arizona Spinal Cord Injury Association is a nonprofit organization dedicated to enhancing the lives of individuals with spinal cord injuries. The Association offers support and education to family members, professionals, and community members.
Brain Injury Association of Arizona 777 East Missouri Ave., Suite 101 Phoenix, Arizona 85014 www.biaaz.org 602.508.8024The Brain Injury Association of Arizona (BIA-AZ) is a non-profit membership organization of people with brain injuries and their families, friends, and service providers working together since 1983 to provide information & referrals, education, advocacy and support for those affected by brain injury.
Candlelighters Childhood Cancer Foundation – Candlelighters of Maricopa County 2320 East Baseline Road Suite 148-206 Phoenix AZ 85042 www.candlelighters.org 480.628.9851Provides information and awareness for children and adolescents with cancer and their families. Programs and services include Candlelighters publications, resource network, and support group meetings.
Epilepsy Foundation of Arizona 240 W. Thomas Road, 2nd Floor Phoenix, AZ, 85013-4407 www.epilepsyfoundation.org/arizona 602.406.3581The Epilepsy Foundation of Arizona is a non-profit organization providing services to those individuals and their families affected by epilepsy in Arizona. The organization is dedicated to ensuring that people with seizures are able to participate in all life experiences and are working to prevent, control and cure epilepsy through services, education, advocacy and research.
Foundation for Blind Children 1235 E. Harmont Drive Phoenix, AZ 85020 www.seeitourway.org 602.331.1470The Foundation for Blind Children is a non-profit organization that helps blind and visually impaired children, adults and their families lead lives of independence and dignity through mastery of their environment. The Foundation provides education, training, counseling, communication and technology.
Leukemia Foundation of AZ PO Box 5820 Peoria, AZ 85385 www.leukemiafoundationofaz.org 480.495.1472LFA is a non-profit organization that provides financial aid and emotional assistance to Arizona children age 21 and under with leukemia and their families.
The Leukemia & Lymphoma Society – The Desert Mountain States Chapter 3877 N. 7th Street Suite 300 Phoenix, AZ 85014 www.leukemia-lymphoma.org/all_chap 602.567.7600The Leukemia & Lymphoma Society has been dedicated to funding blood cancer research, education and patient services since 1954. The organization provides resources and support for individuals with leukemia, lymphoma, Hodgkin’s disease and myeloma, and aims to improve the quality of life of patients and their families.
Muscular Dystrophy Association (MDA) 10235 South 51st Street #195 Phoenix, AZ 85044 www.mda.org 480.496.4530MDA provides services for any individual diagnosed with one of the 40 neuromuscular conditions covered by MDA. Services may include: genetic counseling, physical, speech, occupational and respiratory therapies, pulmonary evaluations, and dietary and orthopedic consultations. Durable medical equipment and other adaptive equipment may be available through local loan pools.
Spina Bifida Association of Arizona 1001 East Fairmount Avenue Phoenix, Arizona 85014 www.sbaaz.org 602.274.3323The Spina Bifida Association of Arizona is a non-profit organization working to enhance the quality of life for those living with Spina Bifida as well as promoting the prevention.
United Cerebral Palsy of Central Arizona 1802 W. Parkside Lane Phoenix, AZ 85027 www.ucpofcentralaz.org 602.943.5472UCP provides support groups for consumers and their family members and friends, shares important information and services across the developmental disability community, and advocates for improved services.
United Mitochondrial Disease Foundation – Arizona Chapter azchapter@umdf.orgProvides support to affected individuals and families.
The Wellness Community – Phoenix 360 East Palm Lane Phoenix, AZ 85004 www.twccaz.org 602.712.1006Provides programs that complement traditional medical care including emotional support, educational seminars, nutrition and exercise classes, and stress management tools.
Disability Resources
Arizona Bridge to Independent Living/Disability Empowerment Center of Arizona 5025 East Washington Street, Suite 200 Phoenix, AZ 85034 www.abil.org 602.256.2245The Arizona Bridge to Independent Living (ABIL) is a private, non-profit corporation that provides services to persons with disabilities. ABIL’s programs include Information & Referral, Peer Support, Home Modifications, Independent Living Skills Instruction, Personal / Home Health Assistance, Americans with Disabilities Act Training & compliance Surveys, consumer Advocacy, and a variety of other community integration and transitional services. In the summer of 2010, the Disability Empowerment Center of Arizona will open the Virginia G. Piper Sports and Fitness Center for Persons with Disabilities.
Arizona Center for Disability Law 5025 E. Washington Street, Suite 202 Phoenix, AZ 85034 www.acdl.com 602.274.628Advocates for the legal rights of persons with disabilities. May provide legal assistance to individuals whose disability is the reason for discrimination, abuse or neglect, or failure to provide needed services. The Center also has a Special Education Hotline to provide advice to students and families relating to special education issues.
Easter Seals Southwest Human Development 2850 N. 24th Street Phoenix, AZ 85008 http://phoenix.easterseals.com 602.266.5976Easter Seals Southwest Human Development provides services to children and adults with disabilities and other special needs, and support to their families.
Mesa Association of Sports for the Disabled (MASD) Arizona Disabled Sports Attn: Lane Jeppesen 59 East Broadway Road Mesa, AZ 85210 www.mesadisabledsports.com 480.835.MASD (6273)The Mesa Association of Sports for the Disabled (MASD) is an all-volunteer, not for profit organization dedicated to providing sports and recreation opportunities to individuals with all types of disability.
National Dissemination Center for Children with Disabilities (NICHCY) State of Arizona Resources 1825 Connecticut Ave NW, Suite 700 Washington, DC 20009 www.nichcy.org/Pages/StateSpecificInfo.aspx?State=AZNICHCY serves the nation as a source of information for: disabilities in infants, toddlers, children, and youth; IDEA, which is the law authorizing special education; No Child Left Behind (as it relates to children with disabilities), and research-based information on effective educational practices. The website above provides information on primarily state-level offices.
The Surprise Community and Recreation Services Department Adaptive Recreation 15960 N. Bullard Avenue Surprise, AZ 85374 www.surpriseaz.com/index.aspx?NID=1459 623.222.2257Offers programs for people of all ability levels, including adaptive sports, dances, and arts & crafts.
Equipment/Loan Closets
Child Improvement through Therapy (CITT) P.O Box 71627 Phoenix, AZ 85050-1627 www.cittkids.org 866.540.8922CITT is a community organization of therapists, parents, businesses and others committed to supporting children and their families with special needs. CITT provides financial resources to offset the costs of raising children with special needs, giving them the opportunity to reach their maximum potential. CITT is the only private, non-profit organization in Arizona whose sole purpose is to assist families with the financial burden of raising a child with special needs. CITT also offers “Sydney’s Closet,” a durable medical equipment loan closet, in collaboration with The Sydney Hudson Foundation.
Solecito Services, Inc. 8320 West Madison, P.O. Box 1273 Peoria, AZ 85380-1273 www.sunliving.com/commdir.equip.html 623.876.5331A non-profit social service agency that loans home health equipment for home use by residents of Peoria, El Mirage, Surprise, Wittmann and Waddell. Hospital beds and equipment with wheels require a doctor’s prescription.
Family Support Services
Aid to Adoption of Special Kids 2320 North 20th Street Phoenix, Arizona 85006 www.aask-az.org 602.254.2275AASK is a private, nonprofit adoption and child placement organization dedicated to building families through adoption and foster care and supporting them for a lifetime. Provides family support services including respite, counseling, family camp, Kids Day Out, parent training for any child who has been adopted or for foster care children.
Black Family and Child Services of Arizona 1522 East Southern Avenue Phoenix, Arizona 85040 www.bfcsfamily.org 602.243.1773BFCS is a non-profit community-based social service agency serving children and families in the metropolitan Phoenix area. Services include counseling, parent aid, parent education and other supportive and educational services.
Hospice of the Valley – Pediatric Outreach program 1510 E. Flower St. Phoenix, AZ 85014 www.hov.org 602.530.6900Provides support, education and facilitation of community resources for families of children who have been diagnosed with a potentially life-limiting illness.
Pilot Parents of Southern Arizona 2600 North Wyatt Drive Tucson, Arizona 85712 www.pilotparents.org 520.324.3150Pilot Parents of Southern Arizona is committed to providing encouragement and support to families who have children with special needs so that their children can reach their maximum potential within the family and society. For community resources and family support in southern Arizona, contact Pilot Parents of Southern Arizona.
Raising Special Kids 5025 E. Washington St. #204 Phoenix, AZ 85034 www.raisingspecialkids.org 602.242.4366Raising Special Kids is a non-profit organization of families helping families of children with disabilities and special health needs in Arizona. Families may contact Raising Special Kids for additional community resources and family support.
Southwest Human Development 2850 North 24th Street Phoenix, AZ 85008 www.swhd.org 602.266.5976Southwest Human Development is a non-profit organization dedicated to Creating a Positive Future for Young Children by focusing on a broad range of programs for young children and their families in the following areas: Child Health & Welfare; Disabilities; Head Start; Training & Education; Child Care Training; and the Arizona Institute for Early Childhood Development.
Financial Support for Expenses
Andrea’s Closet P.O. Box 42358 Phoenix, AZ 85080-2358 www.andreascloset.org 623.556.7608Hospital social workers may also refer families to Andrea’s Closet for other areas of financial relief. The nonprofit organization also provides assistance to families needing support with funeral and burial expenses.
Christopher’s Cure Hardship Fund 7225 W. Oakland St. Suite 1 Chandler, AZ 85226 www.christopherscure.org 480.496.4010Provides financial support to those families of critically ill children with demonstrated needs.
Information and Referral
Community Information & Referral 2200 N Central Ave Ste 601 Phoenix, Arizona 85004 www.cir.org 602.263.8856Provides easy access information for all people relating to health, human, and emergency services provided in Arizona communities. Includes a 24-hour Help Hotline to help you find community services.
The Emily Center Phoenix Children’s Hospital 1919 East Thomas Road Phoenix, AZ 85016 www.phoenixchildrens.com/emily-center/ 602.546.1400A free library at Phoenix Children’s Hospital with books, videos, and articles about child health. The Emily Center staffs nurse librarians who can help families find information. Arizona residents can contact The Emily Center to request health information.
Low income and emergencies
Agua Fria Food and Clothing Bank 405 Harrison Dr. P.O. Box 845 Avondale, AZ 85323 www.pbygrandcanyon.org/ministries/rural_poor.html 623.932.9135Distributes emergency food and clothing, including baby care food program. Eligible for low income and emergencies.
Recreational/Quality-of-Life resources
Arizona Branch of the Association for Play Therapy PMB 199, 3851 E. Thunderbird Rd. #111 Phoenix, AZ 85032 www.azapt.org 602.279.0905Includes links for families to locate a play therapist for their child, upcoming workshops, other resources and more.
Camelot Therapeutic Horsemanship, Inc 23623 N. Scottsdale Road #D3 PMB 259 Scottsdale, AZ 85255-3471 www.camelot-th.org 480.515.1542Provides therapeutic horsemanship, pet visitation therapy, outdoors education and disability awareness training.
Disabled Explorers 2303 N 44th St Suite 14-1160 Phoenix, AZ 85008 www.disabledexplorers.com 602.451.6079The mission of Disabled Explorers is to enhance the quality of life for the disabled through independent 4wd backcountry travel.
Fishing Has No Boundaries Arizona 4241 E Lewis Ave Phoenix, AZ 85008 www.fhnbaz.org 602.553.0003Provides annual fishing events and one-to-one fishing trips for individuals with disabilities.
HopeKids PO Box 55885 Phoenix, AZ 85078 www.hopekids.org 602.843.HOPEHopeKids provides ongoing events & activities and a powerful, unique support community for children with cancer and other life-threatening medical conditions.
Horses Help P.O. Box 71005 Phoenix, AZ 85050 www.horseshelp.org 602.569.6056Provides physical therapy, occupational therapy and recreational horseback riding.
Special Olympics Arizona 1850 North Central Avenue, Suite 900 Phoenix, AZ 85004-4540 www.specialolympicsarizona.org 602.230.1200Provides year-round sports training and athletic competition in a variety of Olympic-type sports for all children and adults with intellectual disabilities, giving them continuing opportunities to develop physical fitness, demonstrate courage, experience joy and participate in a sharing of gifts, skills and friendship with their families, other Special Olympics athletes and the community.
The Starlight Children’s Foundation – Phoenix Office One Renaissance Square 2 North Central Avenue, Suite 170-220 Phoenix, AZ 85004 www.starlight.org/arizona 480.280.5289Starlight provides ongoing support to children, parents and siblings in with an array of outpatient, hospital-based and Web offerings. Starlight programs range from social networking for teens through Starbright World® to Great Escapes™ in the community. Children or families can select programs available by category or condition.
The Sydney Hudson Foundation 10444 E. Corrine Dr. Scottsdale, AZ 85259 www.thesydneyhudsonfoundation.com 480.767.8963Provide vital services, equipment, supplies and recreational activities for special needs children and support for their families.
Medical Resources
Children’s Rehabilitative Services (CRS) Clinic at St. Joseph’s Hospital and Medical Center 124 W. Thomas Rd. Phoenix, AZ 85013 https://secure.chwhealth.org/CRS/index.htm 602.406.6400CRS provides children and their families with medical specialists, nurses, psychologists, and therapists whose expertise is serving children with eligible medical conditions. The goal of CRS is for each child to reach their greatest potential despite their physical disabilities. CRS brings together services for enrolled special needs children in a multispecialty, child and family-friendly clinic setting. Arizona statute defines the services that can be covered for medical care, pharmacy needs, and therapy services.
Child Improvement through Therapy (CITT) P.O Box 71627 Phoenix, AZ 85050-1627 www.cittkids.org866.540.8922 CITT is a community organization of therapists, parents, businesses and others committed to supporting children and their families with special needs. CITT provides financial resources to offset the costs of raising children with special needs, giving them the opportunity to reach their maximum potential. CITT is the only private, non-profit organization in Arizona whose sole purpose is to assist families with the financial burden of raising a child with special needs.
Make-A-Wish Foundation – Arizona Chapter 711 East Northern Avenue Phoenix, AZ 85020 www.arizona.wish.org 602.395.9474Founded in 1980, this non-profit foundation grants the wishes of eligible children with life-threatening medical conditions between the ages of 2 ½ and 18 to enrich the human experience with hope, strength, and joy.
M.I.S.S. Foundation C.A.R.E. Program – Comfort and Resource Enhancement for Families Facing Fatal Birth Conditions P.O. Box 5333 Peoria, Arizona 85385-5333 www.missfoundation.org 1.888.455.MISS (6477)The MISS Foundation C.A.R.E. Program provides perinatal hospice support to families affected by a life limiting or fatal prenatal diagnosis. Support draws upon a multi-disciplinary team of professionals, and MISS Foundation volunteers, to accompany the family affected by a life limiting or fatal prenatal diagnosis through the difficult journey that awaits them. Family centered interventions, provided at no cost to families, occur before the baby is born, during delivery, and for as long into the bereavement period a family wishes to receive support.
Ronald McDonald House Charities 501 E. Roanoke Ave. Phoenix, Arizona 85004 www.rmhcphoenix.com 602.264.2654Ronald McDonald House Charities of Phoenix, Inc. provides a temporary home-away-from-home for families who must travel to the Phoenix area to receive medical treatment for their children and also supports programs that directly benefit children and their families in our community.
P.O.P.S.I.C.L.E. Center 8711 E Pinnacle Peak Road #290 Scottsdale, AZ 85255 www.popsiclecenter.org 602.222.6222P.O.P.S.I.C.L.E. Center is a non-profit organization whose mission is to support and educate families and the medical community to give children with feeding disturbances the best quality of life through early identification and intervention. Provides numerous resources for families of children with feeding disturbances as well as parent support groups and workshops for parents and professionals.
NATIONAL/INTERNATIONAL RESOURCES
Bereavement and Grief
Association for Death Education and Counseling 111 Deer Lake Road, Suite 100 Deerfield, IL 60015 USA www.adec.org/coping/index.cfm 847.509.0403Provides numerous links to support those coping with loss, in additional to numerous educational links.
Centering Corporation 7230 Maple Street Omaha, Nebraska 68134 www.centering.org 866.218.0101The web site for this non-profit organization includes numerous books and resources to support families facing grief and bereavement and educational resources for professionals.
The Dougy Center, the National Center for Grieving Children and Families PO Box 86852 Portland, Oregon 97286 www.dougy.org 866.775.5683The Dougy Center provides support and training locally, nationally and internationally to individuals and organizations seeking to assist children in grief. Site includes resources on bereavement.
Growth House, Inc. www.growthhouse.org 415.863.3045Growth House provides resources for life-threatening illness and end of life care.
Condition Specific
American Institute for Cancer Research (AICR) 1759 R Street, NW Washington, DC 20009 www.aicr.org 800.843.8114AICR provides practical tools and information to help people prevent – and survive – cancer. Includes a nutrition hotline where registered dieticians answer nutrition and health questions, as well as informational publications for those newly diagnosed with cancer.
American Kidney Fund 6110 Executive Blvd., Suite 1010 Rockville, MD 20852 www.kidneyfund.org 800.638.8299Provides financial assistance and assistance to kidney patients to help offset costs such as medication, emergency transportation, dietary needs and other treatment specific expenses. Public and professional education is also available.
Bandaides and Blackboards Joan Fleitas, Ed.D., R.N. Associate Professor of Nursing, Lehman College Bronx, New York 10468 www.lehman.cuny.edu/faculty/jfleitas/bandaides/Website specifically designed for children who have chronic illnesses and disabilities and their siblings and families.
Batten Disease Support and Research Association 166 Humphries Dr. Reynoldsburg, OH 43068 www.bdsra.org 1.800.448.4570Provides support and training to parents of children with Batten’s disease. Coordinates efforts to support research on Batten’s disease and efforts to educate the public and professionals.
MLD Foundation 21345 Miles Drive West Linn, OR 97068-2878 www.mldfoundation.org 1.800.617.8387Information, support, education and on-line networking for families throughout the world dealing with Metachromatic Leukodystrophy (MLD).
National Cancer Institute (NCI) NCI Public Inquiries Office 6116 Executive Boulevard Room 3036A Bethesda, MD 20892-8322 www.cancer.gov 1.800.4.CANCER (1.800.422.6237)Provides information on types of cancer, clinical trials and topics relating to cancer.
National Institutes of Health (NIH) 9000 Rockville Pike Bethesda, Maryland 20892 www.nih.govThe Nation’s Medical Research Agency website includes numerous links and toll free telephone numbers for consumer health topics, current research and initiatives.
National Institute of Neurological Disorders and Stroke
NIH Neurological Institute P.O. Box 5801 Bethesda, MD 20824 www.ninds.nih.gov 800.352.9424Provides information on neurological disorders, clinical trial opportunities and related information and links.
National MPS Society PO Box 14686 Durham, NC 27709-4686 www.mpssociety.org 877.MPS.1001 (877.677.1001)Includes library, family support, research and trial updates and more for Mucopolysaccharidoses (MPS) and related diseases of the genetic lysosomal storage diseases (LSD).
National Organization for Rare Disorders 55 Kenosia Avenue PO Box 1968 Danbury, CT 06813-1968 www.rarediseases.org 800.999.6673Provides links to medication assistance programs and information related to providing care or accessing services for someone with a rare disease.
Toolbox of Hope Healing Heart Communications, Inc. 851 Arlington Place, N.E. Atlanta, Georgia 30306 www.toolboxofhope.com 404.892.1476This toolbox is a step-by-step interactive workbook that provides friendly and practical exercises for children living with illness or disability. Its purpose is to help children and their families deal with the changes and feelings that occur when living with disease.
United Leukodystrophy Foundation 2304 Highland Drive Sycamore, Illinois 60178 www.ulf.org 800.728.5483A voluntary health organization whose purpose is to provide information about leukodystrophy and assist families in identifying resources in medical care, social services and genetic counseling.
Hospice and Palliative Care
Children’s Hospice and Palliative Care Coalition 65 Nielson St. #108 Watsonville, CA 95076 www.childrenshospice.org 831.763.3070This organization helps to empower families and advocate for children by working to improve care for children with life-threatening conditions by promoting compassionate, all-inclusive medical treatment. Provides numerous links to resources available throughout the country, from information about disabilities to resources for financial assistance and more.
Children’s Hospice International 1101 King Street, Suite 360 Alexandria, VA 22314 www.chionline.org1.800.2-4-CHILD CHI provides education, training and technical assistance to those who care for children with life-threatening conditions and their families. The non-profit organization promotes hospice support through pediatric care facilities; encourages the inclusion of children in existing and developing hospice, palliative, and home care programs; includes hospice perspectives in all areas of pediatric care, education, and the public arena. The site includes numerous links to related websites.
Children’s International Project on Palliative/Hospice Services NHPCO 1731 King Street, Suite 100 Alexandria, Virginia 22314 www.nhpco.org/i4a/pages/index.cfm?pageid=3409&openpage=3409Includes current national standards developed by The Children’s Project on Palliative/Hospice Services (ChiPPS), newsletters, resources and related links.
Partnering for Children East Coast Office 1731 King St. Alexandria, VA 22314 www.partneringforchildren.org 800.658.8898Provides information and resources to further the development of compassionate healthcare for children with life-threatening conditions and their families.
Sibling Support
Sibling Support Project A Kindering Center program Don Meyer, Director 6512 23rd Ave NW, #213 Seattle, WA 98117 www.siblingsupport.org 206.297.6368Provides links to sibling support workshops (Sibshops™) throughout the world, resources for brothers and sisters of children with special health needs, and links to forums for siblings and parents.
SuperSibs! 5005 Newport Drive, Suite 502 Rolling Meadows, IL 60008 www.supersibs.orgSuperSibs includes updated information, resources, pictures, tools and events to support siblings of children with cancer.
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