Finding Quality Information
Topic Menu
Common Questions
- What does this diagnosis mean for my child and her future?
- Are there treatments for my child's condition?
- How can I find information I can trust?
- Where can I find another parent who has a similar situation to talk to?
- What services are available where we live?
- Are there support groups for parents like me?
Healthcare Professionals
Care Coordinators
Parent-to-Parent Connections
Public and Private Organizations
Some Reliable Organizations
Online Medical Information
Knowing When Health Information is Reliable
How accurate does this information appear?
- Is the site free of spelling, grammatical, or typographical errors? These are a clue to a lack of quality control on the site.
- Are the sources of information listed so that you could confirm the information from elsewhere?
- Is the information consistent with information from other websites, your health care provider, or other trusted sources?
- Do the pages show when an article was first posted, and when it was last revised or updated?
- Is there recent information on the page indicating that it was written or updated recently?
- If the information is older, you may want to look at other sites for recent improvements or research.
- Does the page fail to mention relevant information that you are aware of, such as new research findings or changes in treatment recommendations?
Does the information appear to be fair and unbiased?
- Is it free of advertising?
- If the site includes ads, are the ads clearly unrelated to the page's information?
- If there are “sponsored posts” or compensation for product reviews, is that information clearly labeled?
- Does the site clearing provide information about
its funding and related policies?
- Is the information supplied as a public service?
- Are there financial disclosures for any advertising?
- Is the site’s funding source obvious?
Who wrote the information?
- Is it clear who wrote and reviewed the information, especially medical information?
- What is the author’s expertise (medical credentials, hands-on professional experience)?
- If information is anecdotal or written by a non-expert, what is the intent and experience of the author?
- If the information comes from a for-profit organization, such as a drug or device manufacturer, what is the purpose of sharing the information?
- Beware of bias if you find questions about injury or harm or links to lawyers.
Types of Web-Based Health Information
Resources
Information & Support
For Parents and Patients
Genetic and Rare Diseases Information Center (GARD)
GARD provides access to experienced information specialists with current and accurate information - in both English and Spanish.
Created in 2002 by the National Human Genome Research Institute (NHGRI) and the Office of Rare Diseases Research (ORDR) -
two agencies at the National Institutes of Health (NIH).
MedlinePlus: Genetics (NLM)
MedlinePlus Genetics provides information for the general public about the main features and inheritance of genetic conditions
as well as the normal function of related genes and chromosomes and how genetic variations contribute to conditions; National
Library of Medicine and National Institutes of Health.
Healthy Children (AAP)
Offers information and advice about child development, health topics, safety and injury prevention, various medical conditions
and educational issues, and parenting; American Academy of Pediatrics.
KidsHealth
KidsHealth is the largest and most-visited site on the web, providing doctor-approved health information about children from
before birth through adolescence. This site offers numerous easy-to-read articles on kids' health, written for parents, teens
and kids.
Mayo Clinic: Patient Care and Health Information
Introductory information about a wide variety of health conditions; from the Mayo Clinic
MedlinePlus Medical Encyclopedia
From the National Library of Medicine and A.D.A.M.; a comprehensive medical encyclopedia aimed at consumers, with lots of
photographs and illustrations
MedlinePlus Understanding Medical Words
Tutorial created by the National Library of Medicine to learn about medical words with examples.
National Organization of Rare Disorders, Patient Information (NORD)
NORD has a dedicated staff of information specialists to answer your questions about patient resources, networking opportunities,
clinical trials and more.
Orphanet
Orphanet is a consortium involving over 40 countries and coordinated in France to provide a portal for information about rare
diseases and orphan drugs.
Services for Patients & Families in Idaho (ID)
Service Categories | # of providers* in: | ID | NW | Other states (5) (show) | | MT | NM | NV | RI | UT |
---|---|---|---|---|---|---|---|---|---|---|
National Support Services, Disab/Diag | 106 | 105 | 105 | 106 | 105 | 105 | 105 |
For services not listed above, browse our Services categories or search our database.
* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.