National Newborn Screening and Genetics Resource Center
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Support/Advocacy Groups

 

Birth Defects

Spina Bifida Association of America                                             Information and support for individuals with spina bifida.

Chromosome Abnormalities

National Down Syndrome Society                                                    Education, research and advocacy for Down Syndrome

Congenital Adrenal Hyperplasia

CARESFoundation                                                                                  Congenital Adrenal Hyperplasia Research, Education, and Support Foundation

Congenital Adrenal Hyperplasia
                                                     
Education and Support Network with access to multiple message boards

Your Child With Congenital Adrenal Hyperplasia
Online publication by Garry Warne.  French, Vietnamese, and Chinese versions.

Cystic Fibrosis

Cystic Fibrosis                                                                                   Online picture book for children: Johnny the Rabbit Has Cystic Fibrosis

Cystic Fibrosis Foundation                                                                The Mission of the Cystic Fibrosis Foundation, a nonprofit donor foundation, is to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease.

Cystic Fibrosis Foundation- Newborn Screening                                   Information on positive CF Screening from the CFF

Fragile X

National Fragile X Foundation                                                          Unites the Fragile X community to enrich lives through educational and emotional support, promote public and professional awareness, and advance research toward improved treatments and a cure for Fragile X.              

General

AHRQ Agency for Health Care Research and Quality Healthcare 411  Using the latest podcasting technology, these weekly audio and video programs feature AHRQ’s latest research findings as news and informational stories on current health care topics.

New York Online Access to Health                                                     General Health database with topics organized by category or alphabetically.

Birth Defect Research
Resource for birth defect information, parent networking and birth defect research through the National Birth Defect Registry.

Centre for Genetics Education                                                       Dedicated to providing current and relevant genetics information to individuals and family members affected by genetic conditions.

Child Trends                                                                                         Social Science Research resource focused exclusively on children for improving their lives.

CYSHCN -Children with Special Healthcare Needs Survey              Data on the health and health-related services for children, youth and families in the United States

Family Health Portrait                                                                        Family History Tool from the Surgeon General

Family Voices                                                                                        A network of families and friends that advocates for health care services that are family-centered, community-based, comprehensive, coordinated and culturally competent for all children and youth with special health care needs.

Genetic and Rare Diseases Information Center                          Employs experienced information specialists to answer in English or Spanish questions from the general public, including patients and their families, health care professionals, and biomedical researchers.

The Genetic Alliance                                                                      Genetic disorder advocacy organization.

Genetic/Rare Conditions Support Groups and Information                    List of support groups organized by disorder.

Got Transition?                                                                                   Got Transition? is a national resource for health care professionals, families, youth, and state policy makers focusing on a young adult's transition from pediatric to adult health care. This site serves as the basis for an information exchange about health care transition, particularly as pertaining to youth with special health care needs.

March of Dimes                                                                                     The leading non-profit organization for pregnancy and baby health.

             March of Dimes-Spanish site

MUMS - National Parent-to-Parent Network
Mothers United for Moral Support, Matching program for parents with children with disabilities or genetic disorders.

The National Alliance                                                                           Devoted to education, research, policy analysis, and technical assistance in support of improved models of care for adolescents and the infrastructure changes needed to support them.

National Information Center for Children and Youth with Disabilities  List of resources for people with disabilities, organized by state.

National PKU Alliance                                                                        The National PKU Alliance works to improve the lives of families and individuals associated with PKU through research, support, education and advocacy, while ultimately seeking a cure.

Office of Rare Diseases-NIH                                                                The Undiagnosed Diseases Program pursues two goals: to provide answers to patients with mysterious conditions that have long eluded diagnosis and to advance medical knowledge about rare and common diseases.

Preserving the Future of Newborn Screening                                     Preserving the Future of Newborn Screening is a coalition of passionate parents, health care and public health professionals, corporations and other interested individuals. We hope to do our part to ensure better education about newborn screening, and about its benefits to society and the health of our children.

Save Babies Through Screening
A nonprofit organization whose mission is to help prevent health issues detectable through newborn screening.  

Special Child
 
An online publication for parents of children with special needs.

State Health Facts                                                                               Profiles on each state regarding health data

Hemoglobinopathies

SCDAA -Sickle Cell Disease Association of America 

Sickle Cell Information Center                                                        Provides sickle cell patient and professional education, news, research updates and world wide sickle cell resources.

Scooter                                                                                    SCOOTER (Sickle Cell Open, Online Topics and Educational Resources). This website contains free Open Education learning materials, quizzes, video and animations

Immune Deficiencies

Immune Deficiency Foundation                                                        The Immune Deficiency Foundation is the National Patient Organization Dedicated to Improving the Diagnosis, Treatment and Quality of Life of Persons with Primary Immunodeficiency Diseases through Advocacy, Education, and Research

Lysosomal Storage Disorders

Fabry Support and Information Group                                                Our mission is to raise awareness of Fabry disease and its symptoms. The FSIG website provides mutual self-help by linking patients and family members/caregivers.

Metabolic Disorders

ASA KIDS                                
A support group for families dealing with Argininosuccinic Aciduria.  

Bailey Baio Angel Foundation                                                          Provides support for those affected by Organic Acid Disorders and advocacy for newborn screening.

Fatty Oxidation Disorders Communication Network (FOD)                   A forum for the sharing of ideas and concerns for Fatty Acid Oxidation Disorders

Hunter's Hope Foundation                                                                   The Foundation aims to increase public awareness of Krabbe Disease and other leukodystrophies, as well as to increase the likelihood of early detection and treatment. The Foundation’s goal is to fund research efforts to identify new treatments, therapies and a cure for Krabbe Disease.

International Organization of Glutaric Acidemia                              We are dedicated to promoting early detection, preventing neurological damage and rehabilitation to those affected by Glutaric Acidemia Type 1 (GA1) and other neurological and metabolic diseases.

The Lily Foundation                                                                             The mission of the Lily Foundation is to raise awareness for expanded newborn screening across the United States and around the world. We perform media outreach to keep screening in the news and provide presentations to health care professionals, students, and parent groups.

Michigan PKU                                                                                        PKU suppport website that provides information, helpful hints, resources, etc for the Michigan PKU population.

National Urea Cycle Disorders Foundation                                             Non-profit organization dedicated to the identification, treatment, and cure of urea cycle disorders.

Organic Acidemia Association (OAA)                                                  
Non-profit organization whose mission is to empower families and health care professionals with knowledge in organic acidemia metabolic disorders.

Parents of Galactosemic Children                                                       Non-profit organization whose mission is to provide information, support, and networking opportunities to families affected by galactosemia.

PKU-NEWS                                                                                           News and information about PKU                                                       State Laws: State laws and policies regarding diet and formula coverage

PKU - Online                                                                                        PKU diet management tool for windows in English, Dutch, Italian, German

Tyrosinemia Support Group                                                             Online message board and support group.

Musculo-Skeletal/Growth Disorders

Magic Foundation
A national non-profit organization providing support and education regarding growth disorders in children and related adult disorders.

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