Web Links To Resources...


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  • China Stem Cell News China Stem Cell News brings you Information on stem cells, research and current treatments available in China. Read stories and watch before and after videos of people with various conditions such as: ALS, Ataxia, Autism, Batten's Disease, Brain injuries, Cerebral Palsy, Epilepsy, Multiple Sclerosis, Parkinson, Spinal Muscular Atrophy, Spinal Cord Injuries and Stroke. Blogs available for many conditions. Talk to people who have tried it.
    These people are improving using Umbilical Cord Stem Cell and Nerve Growth Factor Injections with Rehabilitation Therapy. You have to see this to believe it!!

  • Danielle’s Foundation Resource for families of children with cerebral palsy and brain injuries to help them find the therapy, benefits, and resources their children need. Apply to The Grant Program yo be awarded $2000 to help pay for your child's HBOT!

  • Mercury-Autism Cover-Up!!

  • Ambien Gives Hope to Coma Patients

  • 83 Cases of Autism Associated with Childhood Vaccine Injury Compensated in Federal Vaccine Court.

  • Jenny McCarthy and Jim Carrey's Autism Organization

  • National Vaccine Information Center (NVIC)

    ALERT!!! CUTTING OF IMBILICAL CORD TOO SOON CAUSES BRAIN DAMAGE AND CEREBRAL PALSY!!!

    Youtube Video on Cord Clamping. The hospital Sells your Baby's Cord Blood For Profit!!

    NEW WEBSITE TO SCORE DOCTOR'S PERFORMANCE!! http://www.drscore.com/index.cfm Check on doctors before choosing one and report on how you rate the performance of the doctors you are seeing.

  • Gardasil Vaccine Causes 8864 Adverse Reactions & 18 Deaths

    Acupuncture Cerebral Palsy Miracle

    Parents Exchange & Sell Medical Equipment

    Organizations for General Disorders

  • GENETIC/RARE CONDITIONS SUPPORT GROUPS & INFORMATION Lay advocacy groups, support groups, information on genetic conditions and birth defects for professionals, educators and individuals.

  • BIRTH DISORDER INFORMATION DIRECTORY

  • Genetics Home Reference provides consumer-friendly information about chromosomal Anomalies. (National Library of Medicine)

  • The Maternal and Child Health Library

  • NORD: NATIONAL ORGANIZATION FOR RARE DISORDERS
    National Organization for Rare Disorders, 55 Kenosia Avenue, PO Box 1968, Danbury, CT 06813-1968 203-744-0100 Tollfree: 800-999-6673 (voicemail only) TDD Number: 203-797-9590 203-798-2291 (fax)Emailorphan@rarediseases.org
    The National Organization for Rare Disorders (NORD) is a federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD maintains three searchable databases and an alphabetical index of disease names.

  • Parent to Parent USA The national Parent to Parent programs provide emotional and informational support to families of children who have special needs most notably by matching parents seeking support with an experienced, trained 'Support Parent'.

  • THE ALLIANCE OF GENETIC SUPPORT GROUPS
    4301 Connecticut Avenue, NW, #404 · Washington, DC 20008-2304 (202) 966-5557 · FAX: (202) 966-8553 · (800) 336-GENE -- helpline only, Email: info@geneticalliance.org

  • Perinatal Hospice and Palliative Care - for Parents of Dying Babies

  • ORPHANET is a database dedicated to information on rare diseases and orphan drugs. Access to this database is free of charge.

  • ONLINE MENEDELIAN INHERITANCE IN MAN
    Catalog of human genes and genetic disorders

  • NIH MEDLINE PLUS
    Medical Information & Dictionary

  • CiteHealth: Find and read the reports on Health Care Providers in your area, including hospitals, Medical equipment, nursing homes, rehab centers, home care agencies etc. Report on your experience with the various agencies and rate them.

  • Chromosomal Mosaicism in which some cells have abnormal chromosomes and some are normal>

  • AMERICAN SELF-HELP GROUP CLEARINGHOUSE
    A keyword-searchable database of over 1100 national and international self-help support groups for addictions, bereavement, health, mental health, disabilities, abuse, parenting, caregiver concerns and other stressful life situations. Also lists local self-help clearinghouses worldwide, research studies, information on starting face-to-face and online groups, and a registry for persons interested in starting national or international self-help groups. Sections with suggestions on starting both community and online groups, research studies, a registry for those trying to start new national or international support networks that don't yet exist in the world, and more. If you prefer to phone to get group infomation, the Clearinghouse is located in NJ and may be reached by phoning (973) 326-6789. For a helpful hardcopy guide to groups, the new 7th Edition of its Self-Help Group Sourcebook is now available.

  • UNIQUE - RARE CHROMOSOME DISORDER SUPPORT GROUP IN ENGLANDUnique is a source of information, mutual support and self-help to families of children with any rare chromosome disorders including deletions, trisomy, balanced translocations, unbalanced translocations, rings, inversions, duplications, tetrasomy, monosomy, triploidy, isodicentric, marker, mosaic, sex chromosome aneuploidy (e.g. 47,XXX 47,XYY 48,XXXX 49,XXXXY etc.) etc.

  • INTERNATIONAL RARE DISEASE SUPPORT NETWORK
    CarePlace is an online community for people interested in health conditions. Share pictures, write in journals, post in forums, and send private messages.

  • CONTACT A FAMILY in England Contact a Family is a national registered charity, founded in 1979, dedicated to helping families who care for children with any disability or special need. Contact a Family helps in four ways: by providing information about the disabilities, by putting families in touch with other families, by assisting parents to develop their own local or national support groups, and by providing a voice to raise awareness and campaign for families.

  • SWAN-SYNDROMES WITHOUT A NAME SWAN helps connect, support, and create a welcoming community for families with children who have undiagnosed, unamed conditions, or who are still looking for a diagnosis. SWAN is well established in the UK and expanding to the USA.

  • VALENTIN ASSOCIATION, a french support group for chromosomal disorders
    Association Valentin des Porteurs d'Anomalies Chromosomiques, 52, la Butte Eglantine, 95610 ERAGNY, France phone: 01 30 37 90 97 ou valentinapac@wanadoo.fr

  • PARENT TO PARENT OF NEW ZEALAND Parent to Parent is a support and information network for parents of children with special needs. Support is provided voluntarily by Trained Support Parents who have a child with the same or similar needs. Formed in New Zealand in 1983, the group has built up a support network that is throughout New Zealand, is affiliated to similar groups around the world and maintains close links with other organisations and professionals who work in related fields. Services are free to families.

  • DISABILITY RESOURCES An organization established to promote and improve awareness, availability and accessibility of information that can help people with disabilities live, learn, love, work and play independently.

  • CHILDREN'S NEUROBIOLOGICAL SOLUTIONS FOUNDATION (CNS) is a national, non-profit, 501(c)(3) organization, whose mission is to orchestrate cutting-edge, collaborative research with the goal of expediting the creation of effective treatments and therapies for children with neurodevelopmental abnormalities, birth injuries to the nervous system, and related neurological problems. In addition, CNS strives to provide families and health care providers with user-friendly access to state-of-the-art information and education supporting their decision-making processes.

  • FREE MEDICAL JOURNALS Promoting free access to medical journals.

  • FAMILY VILLAGE A global community that integrates information, resources, and communication opportunities on the Internet for persons with cognitive and other disabilities, for their families, and for those that provide them services and support.

  • SPECIAL NEEDS NETWORK FOR MILITARY FAMILIES (STOMP)
    STOMP (Specialized Training of Military Parents) is a federally funded Parent Training and Information (PTI) Center established to assist military families who have children with special education or health needs. The staff of the STOMP Project are parents of children who have disabilities and have experience in raising their children in military communities and traveling with their spouses to different locations.

  • MEDICAL INFORMATION IN SPANISH www.directoriosalud.com/
    (Mediante este mensaje queremos informarle de la nueva creación de DirectorioSalud.com ( http://www.directoriosalud.com ), portal sanitario desde el cual se podrá acceder a los mejores portales específicos dentro del campo de la Salud.

    Organizations for Specific Disorders

  • CHROMOSOME DELETION OUTREACH ORGANIZATION

  • CLIMB: CHILDREN LIVING WITH INHERITED METABOLIC DISEASES

  • EPILEPSY CIRCLE OF SUPPORT

  • BIRTH DEFECT RESEARCH FOR CHILDREN, INC.
    Birth Defect Research for Children, Inc. (BDRC) provides parents and expectant parents with information about birth defects and support services for their children. BDRC has a parent-matching program that links families who have children with similar birth defects. BDRC also sponsors the National Birth Defect Registry, a research project that studies associations between birth defects and exposures to radiation, medication, alcohol, smoking, chemicals, pesticides, lead, mercury, dioxin and other environmental toxins. Each month, BDRC's electronic newsletters provide thousands of parents, professionals and organizations with updates on the latest birth defect research. BDRC's birth defect information is also available by phone: (407) 895-0802, 9-4 EST, Mon-Fri or mail by writing to BDRC, 930 Woodcock Road, Suite 225, Orlando FL 32803.

  • SOFT: SUPPORT ORGANIZATION FOR TRISOMY 18, 13 & RELATED DISORDERS

  • Parents of Child With Autism Win Vaccine Lawsuit Against Government

  • Support Group for Parents of Children with Mental Health Needs, Autism & Behavioral Challenges

    General Resources

  • Resources to Help with HBO & Medical Expenses

  • Dangerous, Untested Drugs Being Used on Children

  • Stem Cell Therapies

  • What Did You Do All Day?

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  • Fly Fly Little Wing - song for those whose child has died

    Organizations for Information on Lawyers and Doctors

  • www.abms.org
    The American Board of Medical Specialties offers a toll free number 866-ASK-ABMS(275-2267) with operators on hand 24 hours a day to answer questions about whether a physician is board certified, the year certified and in what medical areas he or she is certified.



    MUMS: National Parent to Parent Network
    Julie J. Gordon
    150 Custer Court
    Green Bay, Wisconsin 54301-1243



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    Last updated February 11, 2012