Desmoplastic infantile ganglioglioma

Desmoplastic infantile ganglioglioma
Available at: http://rarediseases.info.nih.gov/GARD/Condition/8648/Desmoplastic_infantile_ganglioglioma.aspx

Desmoplastic infantile gangliomas (DIGs) are rare brain tumors that are normally located in the frontal (http://www.ninds.nih.gov/disorders/brain_basics/know_your_brain.htm) or parietal lobes (http://www.ninds.nih.gov/disorders/brain_basics/know_your_brain.htm) of the brain. They are are usually diagnosed before 18 months of age with most infants presenting with a short duration of symptoms. Although seizures are not commonly observed, a bulging fontanelle (http://www.nlm.nih.gov/medlineplus/ency/article/003310.htm) , rapid head growth, vomiting, and a sunset sign (http://www.wrongdiagnosis.com/bookimages/5/2460.1.jpg) are usually noted. The standard treatment for DIGs is surgical resection (surgical procedure in which the portion of the brain with the tumor is removed). ^[1]

Other names people use for this condition

References

Smith SH. Textbook of Uncommon Cancer. 3rd ed. In: . Uncommon Pediatric Brain Tumors. England:John Wiley & Sons Ltd; 2006:

Questions & Answers (Found 1 Question)

A list of questions from the public on rare and/or genetic diseases that have been answered by the Genetic and Rare Disease Information Center. Click on each question to find the answer.

My son has been diagnosed with a desmoplastic infantile ganglioma? Could you tell me more about this tumor. (http://rarediseases.info.nih.gov/GARD/Condition/8648/QnA/21465/Desmoplastic_infantile_ganglioglioma.aspx)

More Detailed Information (Found 3 resources)

Links where you can find more general information, comprehensive resources, selected full text journal articles, and news updates

General

Cancer.Net (http://www.cancer.net/patient/Cancer+Types/Desmoplastic+Infantile+Ganglioglioma+-+Childhood) , oncologist-approved cancer information from the American Society of Clinical Oncology, provides information about desmoplastic infantile ganglioma. Click on the link to read this information.
The National Cancer Institute (http://www.cancer.gov/cancertopics/pdq/treatment/adultbrain/HealthProfessional/314.cdr#Section_314) provides the most current information on cancer for patients, health professionals, and the general public. Click on the link to view information on this topic.
PubMed (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=DetailsSearch&Term=desmoplastic+infantile+ganglioglioma%5Bti%5D) is a searchable database of medical literature and lists journal articles that discuss Desmoplastic infantile ganglioglioma. Click on the link to view a sample search on this topic.

NLM Gateway (Found 1 resource)

A tool to search across multiple resources offered on the National Library of Medicine's Website

NLM Gateway (http://gateway.nlm.nih.gov/gw/Cmd) allows users to search many resources offered on the National Library of Medicine's Web site at once to quickly find more information about this condition. Some of the resources may be a duplicate of the resources listed on this page. To search NLM Gateway, click on the link; the condition name will already be in the search box, so you can just click the “Search” button.

Services (Found 1 resource)

Links to Web sites that offer services, such as tools to locate specialists, specialty clinics, genetic services, and genetic testing laboratories

Parent Resources

The Parent Technical Assistance Center Network (http://www.parentcenternetwork.org/parentcenterlisting.html) provides a list of the Parent Training and Information Centers in each state. These centers are funded by the United States Department of Education to provide early intervention and special education information and training to parents of children with disabilities from birth to age 26. Click on the link to find the Parent Center in your state.

Scientific Conferences (Found 3 resources)

Resources where you can find information on completed and upcoming scientific conferences and programs

Past Conferences

Overcoming Barriers to International Clinical Trials for Rare Cancers (http://rarediseases.info.nih.gov/ScientificConferences.aspx?PageID=5&ID=1062) , December 10, 2010
Description: The goals of this conference were to introduce key institutional players to the topic of international clinical trials in rare cancers and to establish an ongoing dialogue. Participants left the meeting with a set of specific priorities that need to be enacted to promote these trials. The meeting promoted consensus on the way that resources are prioritized to address rare cancers. Participants were asked to convey the content of the meeting to their constituencies and to follow up with pilot concepts.
VI International Conference on Rare Diseases and Orphan Drugs (ICORD 2010): Global Approach to Accessibility in Rare Diseases, Orphan Drugs and Neglected Diseases (http://rarediseases.info.nih.gov/ScientificConferences.aspx?PageID=5&ID=1027) , March 18, 2010 - March 20, 2010
Location: Palais Rouge Convention Center, Palermo, Buenos Aires
Description: For the first time, the VI International Conference on Rare Diseases and Orphan Drugs (ICORD 2010) was convened in the southern hemisphere in agreement with its aim of globalization of rare diseases research and orphan products development activities.
Nutritional Challenges in the High-Risk Infant (http://rarediseases.info.nih.gov/ScientificConferences.aspx?PageID=5&ID=942) , September 14, 2009 - September 15, 2009
Location: DC Metro Area
Description: Evidence was critically evaluated at this workshop. Current gaps in knowledge in this area were identified and research priorities were formulated. The workshop summary will provide NICHD and the scientific community a template to address the scientific and clinical issues related to nutrition and neonatal care.

Support Groups (Found 7 resources)

Groups providing a wide range of services, supportive resources, and information

Umbrella Organizations

Genetic Alliance
4301 Connecticut Avenue NW
Suite 404
Washington, DC 20008-2369
Telephone: 202-966-5557
Fax: 202-966-8553
E-mail: info@geneticalliance.org
Web site: http://www.geneticalliance.org
National Organization for Rare Disorders (NORD)
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968
Toll-free: 1-800-999-6673 (voicemail only)
Telephone: 203-744-0100
TTY: 203-797-9590
Fax: 203-798-2291
E-mail: orphan@rarediseases.org
Web site: http://www.rarediseases.org/

Social Media/Blogs

DNAandU.org (http://www.dnaandu.org/) is a Web site and blog that collects firsthand stories from people facing issues, making tough decisions, and using genomic (DNA) information in their own healthcare. Click on the link to learn from their experiences and/or submit your own story.
The National Organization of Rare Disorders (NORD) has partnered with Inspire.com to launch an online community for people with rare diseases called The NORD Rare Disease Community (http://nord.clinicahealth.com/index.pl) . This community connects medical patients, family members, caregivers, and professionals. Click on The NORD Rare Disease Community to learn more.
RareShare (http://www.rareshare.org/) is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders. Click on RareShare to learn more.

Parent Matching Organizations

Madisons Foundation
P.O. Box 241956
Los Angeles, CA 90024
Telephone: 310-264-0826
Fax: 310-264-4766
E-mail: getinfo@madisonsfoundation.org
Web site: http://www.madisonsfoundation.org/
MUMS National Parent to Parent Network
150 Custer Court
Green Bay, WI 54301
Toll-free: 1-877-336-5333
Telephone: 920-336-5333
Fax: 920-339-0995
E-mail: mums@netnet.net
Web site: http://www.netnet.net/mums/

Clinical Trials & Research (Found 2 resources)

Resources where you may find research studies and clinical trials

NIH Clinical Trials and You (http://www.nih.gov/health/clinicaltrials/index.htm) is a website developed by the National Institutes of Health (NIH) to help people learn more about clinical trials, why they matter, and how to participate.

Patient Registry

ResearchMatch (https://www.researchmatch.org/?route=gard) is a free national research registry designed to bring together patients, healthy volunteers and researchers. Anyone from the United States can register with ResearchMatch, and a parent, legal guardian, or caretaker may register on behalf of a volunteer. Researchers from participating institutions use the ResearchMatch database to search for patients or healthy volunteers who meet the study criteria. Many studies are looking for healthy people of all ages, while some are looking for people with specific illnesses. ResearchMatch was developed by major academic institutions across the country and is funded by the National Center for Research Resources (NCRR), a center of the National Institutes of Health (NIH), the primary Federal agency for conducting and supporting medical research. Click on the link to learn more about ResearchMatch.

The Genetic and Rare Diseases Information Center was established by the National Human Genome Research Institute and the Office of Rare Diseases Research at the National Institutes of Health to provide responses to public information requests. Information Specialists are available Monday through Friday, 12:00 p.m. to 6:00 p.m. Eastern time (excluding Federal holidays), to respond to questions about genetic and rare diseases.

PO Box 8126
Gaithersburg, MD 20898-8126
Toll-free: 1-888-205-2311
TTY: 1-888-205-3223
Fax: 301-251-4911
E-mail: GARDinfo@nih.gov
Web site: http://rarediseases.info.nih.gov/GARD

Important Disclaimer:
The materials provided are for informational or educational purposes only and are not intended as a substitute for professional medical care, advice, diagnosis, or treatment. This material does not represent an endorsement of any kind including specific tests or products by the National Human Genome Research Institute or the Office of Rare Diseases Research at the National Institutes of Health. We cannot guarantee the accuracy, completeness, timeliness, or usefulness of the opinions, advice, services, or other information. Moreover, we strongly recommend that you seek the advice of your health care provider with any questions regarding your medical care.