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 RESOURCES
Advocates for the Disabled
5060 N 19th Ave Ste 306
Phoenix, Arizona 85015
www.advocatesforthedisabled.org
602.212.2600
Provides disability evaluation services, financial and legal assistance as well as supportive intervention/guidance counseling, psychological and medical evaluations for clients.
Agua Fria Food and Clothing Bank
405 Harrison Dr.
P.O. Box 845
Avondale, AZ 85323
www.pbygrandcanyon.org/ministries/rural_poor.html
623.932.9135
Distributes emergency food and clothing, including baby care food program. Eligible for low income and emergencies.
Aid to Adoption of Special Kids
2320 North 20th Street
Phoenix, Arizona 85006
www.aask-az.org
602.254.2275
AASK 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.
AIDS Project Arizona
www.thinkhiv.org/dp/node/43
877.467.2307
Provides 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 Beginnings
928.783.5794
Provides 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.
American Cancer Society – Phoenix
4550 E Bell Rd Ste 126
Phoenix, AZ 85032
www.cancer.org
602.224.0524
Provides 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.
Andrea’s Closet
P.O. Box 42358
Phoenix, AZ 85080-2358
www.andreascloset.org
623.556.7608
Hospital 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.
Arizona Branch of the Association for Play Therapy
PMB 199, 3851 E. Thunderbird Rd. #111
Phoenix, AZ 85032
www.azapt.org
602.279.0905
Includes links for families to locate a play therapist for their child, upcoming workshops, other resources and more.
Arizona Bridge to Independent Living/Disability Empowerment Center of Arizona
5025 East Washington Street, Suite 200
Phoenix, AZ 85034
www.abil.org
602.256.2245
The 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
602.274.628
Advocates 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.
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 Consortium for Children with Chronic Illness (ACCCI)
2034 E Southern Ave
Suite G
Tempe, AZ 85282
www.accci-az.org
480.557.8445
ACCCI is dedicated to improving the quality of life for chronically ill children and their families through advocacy and education.
Arizona Department of Economic Security
Division of Developmental Disabilities (DDD)
Post Office Box 6123
Phoenix, Arizona 85005
www.azdes.gov/ddd
602.246.0546
The 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
602.542.1860 Office 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
602.417.5010
Arizona's Medicaid health insurance program. Call AHCCCS for an application or for help filling out an application.
Arizona Spinal Cord Injury Association
5025 E Washington St #110
Phoenix, AZ 85034
www.azspinal.com
602.507.4209
The 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.
Black Family and Child Services of Arizona
1522 East Southern Avenue
Phoenix, Arizona 85040
www.bfcsfamily.org
602.243.1773
BFCS 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.
Brain Injury Association of Arizona
777 East Missouri Ave., Suite 101
Phoenix, Arizona 85014
www.biaaz.org
602.508.8024
The 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.
Camelot Therapeutic Horsemanship, Inc
23623 N. Scottsdale Road #D3 PMB 259
Scottsdale, AZ 85255-3471
www.camelot-th.org
480.515.1542
Provides therapeutic horsemanship, pet visitation therapy, outdoors education and disability awareness training.
Camp Rainbow
Phoenix Children's Hospital
1919 East Thomas Road
Phoenix, AZ 85016
www.phoenixchildrens.com/medical-specialties/center-for-cancer-blood-disorders
602.546.0920
This 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
702.408.7326
Located 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.
Candlelighters Childhood Cancer Foundation – Candlelighters of Maricopa County
2320 East Baseline Road
Suite 148-206
Phoenix AZ 85042
www.candlelighters.org
480.628.9851
Provides information and awareness for children and adolescents with cancer and their families. Programs and services include Candlelighters publications, resource network, and support group meetings.
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
602.406.6400
CRS 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.
Christopher’s Cure Hardship Fund
7225 W. Oakland St. Suite 1
Chandler, AZ 85226
www.christopherscure.org
480.496.4010
Provides financial support to those families of critically ill children with demonstrated needs.
Child Improvement through Therapy (CITT)
P.O Box 71627
Phoenix, AZ 85050-1627
www.cittkids.org
866.540.8922
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.
Community Information & Referral
2200 N Central Ave Ste 601
Phoenix, Arizona 85004
www.cir.org
602.263.8856
Provides 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 Compassionate Friends of The Valley of the Sun
P.O. Box 50523
Phoenix, AZ 85076
www.tcfphoenix.org/
602.841.8649
The 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
480.503.9676
Sponsored 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.
Easter Seals Southwest Human Development
2850 N. 24th Street
Phoenix, AZ 85008
http://phoenix.easterseals.com
602.266.5976
Easter Seals Southwest Human Development provides services to children and adults with disabilities and other special needs, and support to their families.
The Emily Center
Phoenix Children's Hospital
1919 East Thomas Road
Phoenix, AZ 85016
www.phoenixchildrens.com/emily-center/
602.546.1400
A 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.
Epilepsy Foundation of Arizona
240 W. Thomas Road, 2nd Floor
Phoenix, AZ, 85013-4407
www.epilepsyfoundation.org/arizona
602.406.3581
The 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.
Fishing Has No Boundaries Arizona
4241 E Lewis Ave
Phoenix, AZ 85008
www.fhnbaz.org
602.553.0003
Provides annual fishing events and one-to-one fishing trips for individuals with disabilities.
Foundation for Blind Children
1235 E. Harmont Drive
Phoenix, AZ 85020
www.seeitourway.org
602.331.1470
The 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.
HopeKids
PO Box 55885
Phoenix, AZ 85078
www.hopekids.org
602.843.HOPE
HopeKids 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
602.569.6056
Provides physical therapy, occupational therapy and recreational horseback riding.
Hospice of the Valley – Pediatric Outreach program
1510 E. Flower St.
Phoenix, AZ 85014
www.hov.org
602.530.6900
Provides support, education and facilitation of community resources for families of children who have been diagnosed with a potentially life-limiting illness.
Leukemia Foundation of AZ
PO Box 5820
Peoria, AZ 85385
www.leukemiafoundationofaz.org
480.495.1472
LFA 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
602.567.7600
The 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.
Make-A-Wish Foundation – Arizona Chapter
711 East Northern Avenue
Phoenix, AZ 85020
www.arizona.wish.org
602.395.9474
Founded 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.
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.
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.
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.
Muscular Dystrophy Association (MDA)
10235 South 51st Street #195
Phoenix, AZ 85044
www.mda.org
480.496.4530
MDA 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.
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=AZ
NICHCY 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.
Native American Community Health Center, Inc.
4520 North Central Avenue
Phoenix, Arizona 85012
www.nativehealthphoenix.org
602.279.5262
Provides holistic, patient centered, culturally sensitive health and wellness services. Includes numerous services and programs available for Native Americans.
New Song Center for Grieving Children
6947 E. McDonald Drive
Scottsdale, AZ 85253
www.thenewsongcenter.org
(480) 951-8985
New 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.
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.
Phoenix Indian Center, Inc.
4520 North Central Avenue, Suite 250
Phoenix, Arizona 85012
www.phxindcenter.org
602.264.6768
Provides social, economic, educational, leadership, employment and training resources for urban American Indians residing in Maricopa County.
Pilot Parents of Southern Arizona
2600 North Wyatt Drive
Tucson, Arizona 85712
www.pilotparents.org
520.324.3150
Pilot 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.
P.O.P.S.I.C.L.E. Center
8711 E Pinnacle Peak Road #290
Scottsdale, AZ 85255
www.popsiclecenter.org
602.222.6222
P.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.
Raising Special Kids
5025 E. Washington St. #204
Phoenix, AZ 85034
www.raisingspecialkids.org
602.242.4366
Raising 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.
Ronald McDonald House Charities
501 E. Roanoke Ave.
Phoenix, Arizona 85004
www.rmhcphoenix.com
602.264.2654
Ronald 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.
Solecito Services, Inc.
8320 West Madison, P.O. Box 1273
Peoria, AZ 85380-1273
www.sunliving.com/commdir.equip.html
623.876.5331
A 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.
Southwest Human Development
2850 North 24th Street
Phoenix, AZ 85008
www.swhd.org
602.266.5976
Southwest 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.
Special Olympics Arizona
1850 North Central Avenue, Suite 900
Phoenix, AZ 85004-4540
www.specialolympicsarizona.org
602.230.1200
Provides 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.
Spina Bifida Association of Arizona
1001 East Fairmount Avenue
Phoenix, Arizona 85014
www.sbaaz.org
602.274.3323
The 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.
The Starlight Children’s Foundation – Phoenix Office
One Renaissance Square
2 North Central Avenue, Suite 170-220
Phoenix, AZ 85004
www.starlight.org/arizona
480.280.5289
Starlight 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.
Stepping Stones of Hope
4000 North 7th Street, Suite 108
Phoenix, Arizona 85014
www.steppingstonesofhope.org
602.264.7520
Provides 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.
The Surprise Community and Recreation Services Department
Adaptive Recreation
15960 N. Bullard Ave.
Surprise, AZ 85374
www.surpriseaz.com/index.aspx?NID=1459
623.222.2257
Offers programs for people of all ability levels, including adaptive sports, dances, and arts & crafts.
The Sydney Hudson Foundation
10444 E. Corrine Dr.
Scottsdale, AZ 85259
www.thesydneyhudsonfoundation.com
480.767.8963
Provide vital services, equipment, supplies and recreational activities for special needs children and support for their families.
United Cerebral Palsy of Central Arizona
1802 W. Parkside Lane
Phoenix, AZ 85027
www.ucpofcentralaz.org
602.943.5472
UCP 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.org
Provides support to affected individuals and families.
The Wellness Community – Phoenix
360 East Palm Lane
Phoenix, AZ 85004
www.twccaz.org
602.712.1006
Provides programs that complement traditional medical care including emotional support, educational seminars, nutrition and exercise classes, and stress management tools.
NATIONAL/INTERNATIONAL RESOURCES
American Institute for Cancer Research (AICR)
1759 R Street, NW
Washington, DC 20009
www.aicr.org
800.843.8114
AICR 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
800.638.8299
Provides 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.
Association for Death Education and Counseling
111 Deer Lake Road, Suite 100
Deerfield, IL 60015 USA
www.adec.org/coping/index.cfm
847.509.0403
Provides numerous links to support those coping with loss, in additional to numerous educational links.
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/
Web site 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
1.800.448.4570
Provides 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.
Centering Corporation
7230 Maple Street
Omaha, Nebraska 68134
www.centering.org
866.218.0101
The web site for this non-profit organization includes numerous books and resources to support families facing grief and bereavement and educational resources for professionals.
Children’s Hospice and Palliative Care Coalition
65 Nielson St. #108
Watsonville, CA 95076
www.childrenshospice.org
831.763.3070
This 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.org
1.800.2-4-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=3409
Includes current national standards developed by The Children's Project on Palliative/Hospice Services (ChiPPS), newsletters, resources and related links.
The Dougy Center, the National Center for Grieving Children and Families
PO Box 86852
Portland, Oregon 97286
www.dougy.org
866.775.5683
The 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
415.863.3045
Growth House provides resources for life-threatening illness and end of life care.
MLD Foundation
21345 Miles Drive
West Linn, OR 97068-2878
www.mldfoundation.org
1.800.617.8387
Information, 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.gov
The 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
800.352.9424
Provides 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
800.999.6673
Provides links to medication assistance programs and information related to providing care or accessing services for someone with a rare disease.
Partnering for Children
East Coast Office
1731 King St.
Alexandria, VA 22314
www.partneringforchildren.org
800.658.8898
Provides information and resources to further the development of compassionate healthcare for children with life-threatening conditions and their families.
Sibling Support Project
A Kindering Center program
Don Meyer, Director
6512 23rd Ave NW, #213
Seattle, WA 98117
www.siblingsupport.org
206.297.6368
Provides 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.org
SuperSibs includes updated information, resources, pictures, tools and events to support siblings of children with cancer.
United Leukodystrophy Foundation
2304 Highland Drive
Sycamore, Illinois USA 60178
www.ulf.org
800.728.5483
A 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.
Updated December 31, 2009