Category:Support
From Holoprosencephaly
On this page, you will find these support categories:
•Parent, Caregiver and Family Support •Siblings Support •Non-Profit Organizations •Health Support Organizations •Support/Information outside of the United States
PARENT, CAREGIVER AND FAMILY SUPPORT
• Yahoo Support Group This is an online support group for parents, caregivers and family members of individuals with HPE.
• Families for HOPE Families for HoPE, Inc. is a 501(c)(3) nonprofit organization formed to address the needs of families and children diagnosed with holoprosencephaly (HPE) and related brain malformations.
• HPE Family Newsletter This newsletter shares stories, offer love and support to families, friends, and caretakers that have been touched by a child diagnosed with HPE and other related brain malformations.
• Holoprosencephaly Support Pages Contains links to various resources related to Holoprosencephaly
• Parents Helping Parents Support Org Parents Helping Parents Support Org
• Parent-2-Parent Parent-2-Parent provides support for reflux and many other issues facing parents of special needs children
• MUMS MUMS- National parent to parent network
• Cerebral Palsy Parent Cerebral Palsy Parent Home Page
• HPE Loss Support Group Support for parents who have lost a child with holoprosencephaly
• When a Child Dies HPE Loss Support Group
• Special Child Exchange This organization helps families locate necessary medical supplies and/or durable medical equipment that is not being utilized or outgrown by other special needs children. Caregivers can become a member of the SCE online group by visiting: Child Exchange Special Child Exchange Yahoo Group
• Living With Trisomy 13 Support for those living with Trisomy 13
• Origins of Cerebral Palsy This site in an excellent resource for caregivers of children with cerebral palsy. It provides practical advice and information about issues with this condition.
SIBLINGS SUPPORT
• Support for Adult Sibling/Child Siblings Support for Adult Sibling/Child Siblings of People with Special Needs
• Soda Pop Online Soda Pop Online, which stands for: Siblings of Disabled (Kids) and Peers Offering Promise. This online space is made for kids and teenagers who have a sibling or friend with a disability.
• Support Project Support Project . The Sibling Support Project is a national program dedicated to the interests of brothers and sisters of people with special health and developmental needs. Find out more about holding a Sibshop and search the database of over 350 existing Sibshops and other sibling programs across the United States, Canada and beyond.
NON-PROFIT ORGANIZATIONS
• United Cerebral Palsy ---Support for individuals with cerebral palsy
• Easter Seals This organization helps individuals with disabilities and special needs, and their families, live better lives by offering a variety of services to help address life's challenges and achieve personal goals.
• Photograghers Charity Guild ---A non-profit, volunteer based organization of child photographers from all over the country who provide complimentary portrait sessions to desperately ill children.
• Children with Special Needs Organization ---Information and resources for special needs children
• National Organization Caring for Kids ---Assistance and support for special needs children
• Epilepsy Foundation ---Support and information for epilepsy and seizure disorders
• Make A Wish Foundation ---Wish granting for chronically and terminally ill children
• Give Kids The World ---Give Kids The World vacation destination supporting disabled and terminally ill children
• Quilts for Love ---Quilts for Love for Chronically Ill Children
• Special Olympics ---Organization for special athletes
• Chariots of Hope This is a nonprofit organization, has been established for the purpose of collecting used wheelchairs. The donated wheelchairs are then repaired and distributed, at no cost to the recipient, to those in need.
• Grottoes of North America ---Grottoes of North America (a masonic organization providing free dental care for disabled children)
• Children's Miracle Network This is a non-profit organization dedicated to saving and improving the lives of children by raising funds for children's hospitals across North America.
• National Organization on Disabilities ---Providing disability awareness/service info
• Patient Advocate Foundation ---Patient advocacy support and information
HEALTH SUPPORT ORGANIZATIONS
• March of Dimes Birth Defects Foundation This organization provides support to babies who are premature, low-birth weight or have birth defects and their families.
• The Oley Foundation ---Support for gastrointestinal disorders
• Gluten Intolerance Group ---Gluten Intolerance support group
• Human Growth Foundation ---Human Growth Foundation provides support for growth hormone disorders
• Birth Defect Research for Children ---Birth Defect Research for Children
• CHASER ---CHASER: Congenital Heart Anomalies - Support, Education, & Resources, Inc.
• National Hydrocephalus Foundation ---Information and resources for Hydrocephalus
• Children's Hospice International ---Children's Hospice International
• Pediatric/Adolescent Gastroesophageal Reflux Association ---(PAGER) Pediatric/Adolescent Gastroesophageal Reflux Association
• Magic Foundation ---Support for growth disorders
• The Endocrine Web ---Information and resources for endocrine disorders
• The Hormone Society ---Information and resources for endocrine disorders
• American Society for Parenteral & Enteral Nutrition ---Information and resources for parenteral and enternal feeding
• Alliance of Genetic Support Groups ---Alliance of Genetic Support Groups
• National Organization of Rare Diseases ---National Organization of Rare Diseases
• Diseases and Conditions.com --Information on various diseases and conditions
• Digestive Disease National Coalition ---Support and information for digestive diseases
• Endocrine Society ---Information and resources for endocrine disorders
• Chromosome Deletion Outreach International ---Chromosome Deletion Support
• New Visions ---New Visions (workshops on oral feeding skills)
• KidsMove Organization ---Support and information for movement disorders)
• Rare Chromosome Disorder Support Group ---Support for rare chromosome disorders
• Cyclic Vomiting Syndrome Association ---Information and resources for cyclic vomiting syndrome
• Foundation for Functional GI Disorders ---Support and information for functional GI disorders
• Lissencephaly Network, Inc ---Lissencephaly Network, Inc
• United Ostomy Association ---Ostomy support and information
• National Health Law Program ---Information about national health law
SUPPORT/INFORMATION OUTSIDE OF U.S.
•LifeNets This is a 501 (c) (3) non-profit organization that develops programs offering practical assistance to promote the well being and self sufficiency of disadvantaged people throughout the world and, where possible, encourages them to pass on their LifeNets gift. Through volunteer help we have helped thousands of people in Latin America, Africa, Ukraine, the Baltics and more.
Australia
•http://groups.yahoo.com/group/ausholoprosencephaly Australian HPE support group
•http://www.disability.vic.gov.au Australian government disability services guide
• http://www.agsa-geneticsupport.org.au Association of Genetic Support Inc. Australia(AGSA)
Canada
•http://www.cfcs.gov.on.ca/cs/en/programs/special Ontario Ministry of Child/Youth Services
•http://www.hopeair.org Medical flight assistance in Canada
•http://www.cpena.ca Canadian Parenteral-Enteral Nutrition Association
• http://www.chs.ca The Canadian Hearing Society
Europe
•http://www.espen.org European Society for Parenteral & Enteral Nutrition
France
•http://fr.groups.yahoo.com/group/holoprosencephale French HPE support group
United Kingdom
•http://www.everychildmatters.gov.uk United Kingdom Developmental Disabilities Resources
