Search Results: MCH Organizations

Annotation: The Human Growth Foundation (HGF) disseminates information on short stature and its causes, supports medical research on growth disorders, and sponsors educational and parent support activities. Publications include Achondroplasia, Growth Hormone Deficiency, Intrauterine Growth Retardation, Patterns of Growth, Turner's Syndrome,and many more. HGF hosts a list serv and publishes a quarterly newsletter. Patient advocacy information, training, and assistance is also an evolving area of Foundation activity, given increasingly difficulty in obtaining medical insurance coverage for Idiopathic Short Stature with underlying etiologies. These activities take place principally through the HGF Internet support Lists (HGF-PEDS and HGF-ADULTS). Limited resources may be obtained in Spanish. The organization also sponsors Annual conferences.

Keywords: Achondroplasia, Fetal growth retardation, Growth disorders, Growth hormone, Hypopituitarism, Russell-Silver syndrome, Short stature, Turners syndrome

Annotation: Little People of America (LPA) works to help people of short stature and their families through fellowship, moral support, and the exchange of ideas and information. The organization offers educational and social programs, workshops, and discussion groups for short-statured individuals, their families, and the public. The LPA Medical Advisory Board helps members to become better informed about their particular type of short stature. Publications include Little People in America, It's A Whole New View (English and Spanish), and a newsletter produced six times a year, LPA Today. Audiovisual materials include Little People (PBS documentary, 1984). Some materials are available in Spanish.

Keywords: Achondroplasia, Dwarfism, Growth disorders, Short stature

Annotation: The Little People's Research Fund (LPRF) was established in 1980 as a nonprofit health organization to support research into the disabling conditions of skeletal dysplasia (dwarfism) for patient care, and for education of the medical community, as well as the general public. Research is being conducted on several fronts. The development of affected children through adolescence and into adulthood is being documented, statistically correlated, and analyzed. Twenty-five years of surgical procedures on hundreds of patients are being tracked and studied to improve today's procedures. New procedures are being implemented as technology improves. The goals of LPRF are: to continue to fund research on the orthopedic disabilities associated with dwarfism, to provide funds for direct patient care/services, to establish a training program for other medical professionals in this unique area of orthopedics, nursing, physical therapy, and counseling; to educate the public about the difficulties faced by Little People; and to support the Pierre House for Parents, sponsor clinics in other areas and, where possible, assist financially with braces and other prostheses. The organization publishes a newsletter.

Keywords: Achondroplasia, Dwarfism, Growth disorders, Short stature

Annotation: The MAGIC(Major Aspects of Growth in Children)Foundation is a national nonprofit organization serving children and adults with critical and or chronic illnesses affecting their growth, including Precious Puberty, Congenital Adrenal Hyperplasia, Septo Optic Dysplasia, Adult Growth Hormone Deficiency, McCune Albright syndrome, Truner syndrome, Genital and Reproductive Anomalies, Hypophosphatasia, Panphypopituitarism, Congenital Hypothyroidism, Growth Hormone Deficiency, Russell-Silver Syndrome and many other Rare Disorders. Incorporated within MAGIC are families, children, and medical professionals in various fields of children's health. Services available through the foundation include support groups, referrals, a financial assistance fund, a birthday club for kids, kid's pen pal program, community outreach programs, family networking, quarterly newsletters, kids' newsletters, and a toll free parent help line (1-800-3 MAGIC 3). Services to consumers include referrals and publications. Educational brochures available include: Congenital Hypothyroidism, Intrauterine Growth Retardation, Hypophosphatasia, Underlying Conditions of Growth Abnormalities, Growth Hormone Deficiency ,The Most Frequently Asked Questions When Beginning Growth Hormone Therapy, Constitutional Growth Delay, Precocious Puberty, Turner's Syndrome, Congenital Adrenal Hyperplasia, Clinical Hypothyroidism, McCune Albright Syndrome, Psychosocial Issues of Growth Delayed Children, Dental Problems Associated with GHD, Me and My Growth Hormone - A Child's View, Septo Optic Dysplasia, Panhypopituitarism, Failure to Thrive, Russell-Silver Syndrome, Newborns with Non-typical Genital Appearance, When My Child May Have Fertility Problems, Adult Growth Hormone Deficiency, etc. The MAGIC Foundation also publishes a magazine and sponsors an annual convention in July.

Keywords: Chronic illnesses and disabilities, Child health, Congenital adrenal hyperplasia, Congenital hypothyroidism, Development, Down syndrome, Education, Financial support, Growth disorders, McCune Albright syndrome, Russell Silver syndrome, Short stature, Support groups, Support groups, Turners syndrome