Articles

• Holoprosencephaly articles from PubMed of the National Library of Medicine.  The articles listed here tend to be highly technical research papers, but careful searching of the articles can often uncover important and useful information.  Type the topic in the search box on the PubMed Web site.   

Forums

If you join one of these support groups, please mention that you found their group through Medconsumer.info.

• AHeartbreakingChoice · For members of the AHC email group.  "A group for parents who have terminated loved & wanted pregnancies after learning that their babies had serious/fatal birth defects. This is a closed & moderated group where only supportive notes will be posted. Professionals, including genetics counselors, bereavement counselors and physicians who regularly deal with this type of loss, are welcome to lurk on the list."  Yahoo! Group.   
• Ausholoprosencephaly · Holoprosencephaly - Australia.  "This group is intended as a support group for parents and families of children with Holoprosencephaly within Australia.
  
  Holoprosencephaly is a disorder caused by the failure of prosencephalon (the forebrain of the embryo) to divide to form bilateral cerebral hemispheres, causing defects in the development of the face and in brain structure and function. HPE consists of a spectrum of defects or malformations of the brain and face. At the most severe end of this spectrum are cases involving serious malformations of the brain, malformations so severe that they are incompatible with life and often cause spontaneous intrauterine death. At the other end of the spectrum are individuals with facial defects - which may affect the eyes, nose, and upper lip and normal of near normal brain development. Seizures and mental retardation may occur. Although the cause of most cases of HPE remain unknown, researchers know that approximately one-half of all cases have a chromosomal cause. Come and join other parents that have children with HPE in our Australian Support Group."   
• Baby_jayden05 · Support.  "This group is for people who have or have had children with holoprosencephaly. It is for people who want to talk about their experiences, and for people to know there are people who have gone through this situation."   
• BeingSick · A global community of loving people who understand what its like to be sick or care for a loved one.  "We are a community of loving supportive people who understand what its like to be sick. We live with illness, injury, disability, or care for those that do. This group is a place where you are free to be yourself. Share your frustrations about being sick, friendships, family, and just about anything! We are the family who understands when no one else does! We live your life too! You are welcome to post in HTML, colors, send links, web pages, poems, inspiration, e-cards, jokes, chat in our chat room anytime! We are non-denominational, welcoming all races, ages, religions and cultures. We know how tough life is being sick, and we care. There is support for you here anytime you need us. You are not alone."  Yahoo! group.
• Birth-defects · Birth Defects - from a cleaning chemical.  "May every couple who wants to have a child be able to have one.
  
  No more Infertility! No more miscarriages!
  
  May every child be born healthy.
  
  Holoprosencephaly & other rare birth defects, may not be so rare, if you lookat them as a group. Look at the same information from a new viewpoint.
  
  For sure, learn about a common teratogen, 2-butoxyethanol.
  
  Avoid it for YOUR health & that of your child!"    
• Holoprosencephaly · Holoprosencephaly Support Group.  "Welcome to our support group for parents and families of children with Holoprosencephaly. HPE is a rare birth disorder caused by the failure of prosencephalon (the forebrain of the embryo) to properly divide, causing defects in the development of the face and in brain structure and function. Come join other parents, grandparents and caregivers who love children with this diagnosis."   
• Hpe_support · Holoprosencephaly.  "This is an open forum support eGroup for persons affected by "Holoprosencephaly." This support eGroup has been established for patients, family members, medical professionals and rare disease researchers interested in sharing information and/or support for affected persons."    
• HPElosssupport · Holoprosencephaly Loss Support.  "This group is designed to support those parents, grandparents and other family members who have lost a child to Holoprosencephaly. Please join us while we remember our angels who will live on in our hearts forever.
  
  This is Issac, he is Michelle's angel boy. His birthday was on January 11th. We are remembering him on this month. He is missed terribly by his family..."  
• Hpemoms · HPE moms can be healthy moms, too.  "This group was created to allow the mothers of children with holoprosencephaly to support and encourage each other toward the goal of a healthy lifestyle. As caregivers of disabled children, we often neglect ourselves. This group is a place where we can remind each other to take time for ourselves. Discussions can include topics such as: emotional eating, finding time for exercise, how we respond to stressful situations, our goals and progress toward healthy living, eating and exercise plans, recipes, etc."   
• Medconsumerinfo.  "Medconsumer.info is your starting point for searching the Web for medical information. This forum exists for you to discuss, ask questions, and answer questions about any aspect of health, healthcare industry, and any aspect of being a patient. Please take whatever advice you receive through this forum to your doctor before changing or initiating any medically-related behavior."  Yahoo! group.    
• Whenachilddies · Holoprosencephaly and loss of a child.  "This group is intended to support those parents, grandparents, caregivers and family members who have lost a child to Holoprosencephaly or other disorders or diseases of the brain. There are many stages of grief that those of us who have lost a child, go through. Grief changes like the seasons. It can also be very misunderstood by others who have not experienced this pain. Please join us while we support each other through our long and never-ending journey. We welcome your thoughts."        

News

• Holoprosencephaly news from Google News.  

Organizations

• Carter Centers for Brain Research in Holoprosencephaly and related Malformations.
• National Institute of Neurological Disorders and Stroke.  "The National Institute of Neurological Disorders and Stroke (NINDS) conducts and supports research on brain and nervous system disorders. Created by the U.S. Congress in 1950, NINDS is one of the more than two dozen research institutes and centers that comprise the National Institutes of Health (NIH). The NIH, located in Bethesda, Maryland, is an agency of the Public Health Service within the U.S. Department of Health and Human Services. NINDS has occupied a central position in the world of neuroscience for 50 years.
  
  More than 600 disorders afflict the nervous system. Common disorders such as stroke, epilepsy, Parkinson's disease, and autism are well-known. Many other neurological disorders are rare-known only to the patients and families affected, their doctors, and scientists who look to rare disorders for clues to a general understanding of the brain as well as for treatments for specific diseases. Neurological disorders strike an estimated 50 million Americans each year, exacting an incalculable personal toll and an annual economic cost of hundreds of billions of dollars in medical expenses and lost productivity.
  
  The mission of the NINDS is to reduce the burden of neurological disease—a burden borne by every age group, every segment of society, and people all over the world. To accomplish this goal the NINDS supports and conducts research, both basic and clinical, on the normal and diseased nervous system, fosters the training of investigators in the basic and clinical neurosciences, and seeks better understanding, diagnosis, treatment, and prevention of neurological disorders."     

Photographs

• Holoprosencephaly photographs from Google Images.  
• HPE-kidpics.  "Welcome to our site! This is a group where we post photos of our very special children with Holoprosencephaly. We have SO many special children who have joined us over the years that we now need TWO photo sites! You may view our second site here:  http://health.groups.yahoo.com/group/HPE-kidpics2/."   
• HPE-kidpics2.  "Welcome to our SECOND photo site! This is a group where we post photos of our very special children with Holoprosencephaly. We have SO many special children who have joined us over the years that we now need TWO photo sites!"    

Video

• Holoprosencephaly video from YouTube.com.
• "Living with Hope: Understanding Holoprosencephaly"  "This captivating and heartwarming video explores the nature of holoprosencephaly (HPE), the wide range of its manifestations, its cause, treatment and probable outcomes. Moreover, it is also a story about families who have a child diagnosed with HPE. It is also a tale of courage, determination and triumph. It is ultimately a story of hope."