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Running head: ANNOTATED BIBLIOGRAPHY 1

Annotated Bibliography
Ashley Jordan
Ivy Tech Community College













ANNOTATED BIBLIOGRAPHY 2

Name of Website: Genetics Home Reference
URL: http://ghr.nlm.nih.gov/condition/triple-x-syndrome
Overview: One may find information on what Triple X syndrome is and how common this
syndrome occurs in the United States. Genetic changes and how the syndrome is inherited are
also included on this site. Other sources are listed that people can look at if they wish to find out
more information about Triple X syndrome.
Evaluation: This site is just a general database for Triple X syndrome it is not a specific
organization of the syndrome. It does however, have some useful information about the
syndrome and provides many links to other resources. I found that the fact about how common
the syndrome occurs in the U.S. to be interesting.

Name of Website: The National Organization for Albinism and Hypopigmentation
URL: http://www.albinism.org/publications/what_is_albinism.html
Overview: An overview, of what exactly albinism is, problems of the disease, and different types
of the disease are listed. A scholarship and news about the disorder may be found while
navigating this website. An on-line community for people with this disease can also be seen
when visiting this site. There are several related links that are listed for people that wish to visit
them and learn more about albinism.
Evaluation: Kids may not want to visit this site without the help of a parent. Several publications
can be read concerning the disorder, so please read them! I found it very thoughtful that the
creators of this website included related links to other websites that had information about
albinism.

ANNOTATED BIBLIOGRAPHY 3

Name of Website: Huntington's Disease Society of America
URL: http://www.hdsa.org/
Overview: Hdsa.org offers information about what Huntingtons Disease is. One may find
research webinars that may be viewed. A section for news and announcements about HD can be
found on this site. One can also find national sweepstakes information concerning the disease.
Various ways to help people with HD are included on the website.
Evaluation: This website is directed towards adults more but a child may be interested in the
webinars. Adults should check out the webinars about this disease because they are insightful. I
found that this site has a national sweepstakes concerning Huntingtons to be very original.

Name of Website: The William E. Proudford Sickle Cell Fund
URL: http://www.wepsicklecell.org/about/
Overview: This website states the causes and what sickle cell anemia really is. It supports
various ways that people can get involved to help with the disease. One may find videos and
other resources that describe the disease further. The corporation also list events that someone
may want to attend to learn more about sickle cell. A program was created that tries to help unite
kids and families associated with the disease.
Evaluation: Wesicklecell.org is a website that offers information or resources for parents as well
as children. The videos abut sickle cell is something that everyone should take a look at. I found
the Artspeaks program to be very heartwarming because it is great to have a program that unites
parents and children connected with the disease together.

Name of Website: Kids Health
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URL: http://kidshealth.org/teen/diseases_conditions/genetic/klinefelter.html
Overview: Klinefelters Disease is describe on this site along with the reason why it is a genetic
disorder. Signs of this disease are listed, but boys may find out that they are fertile if they read
about other problems associated with this disease. Information about what doctors can do for
someone with this disease can be found on this site. Treatment options are listed that may help a
boy with developing more in the way he should.
Evaluation: This site is both parent and kid or teenager friendly. The website effectively lists
other problems that may occur due to this disease. I found that the treatment section of this
website described how boys with Klinefelters may be able to live and develop more as they
should.

Name of Website: U.S. National Library of Medicine
URL: http://www.nlm.nih.gov/medlineplus/ency/article/001166.htm
Overview: Shown on this website is the main causes and symptoms of Phenylketonuria (PKU).
PKU is actually a disease that is easily caught by a blood test and this disease is treatment is
caught early. The site suggest that the outlook of people with this disease looks good if they
follow suggested diet. One may find possible complications and prevention of the disease on this
website.
Evaluation: This website has fantastic information for parents but is not necessarily directed
towards kids. I found it important that the outlook and prevention were listed for this disease
because I did not know there was an upside to this disease before looking at this site.

Name of Website: Turner Syndrome Society of the United States
ANNOTATED BIBLIOGRAPHY 5

URL: http://www.turnersyndrome.org/
Overview: Turnersyndrome.org an overview of what the syndrome is and some facts about it.
There is an interesting timeline of the medical advances that have helped people with the
syndrome. Support groups and scholarship opportunities can be found on this website. Parents
and women whom may have the disease can find some helpful information. Several
opportunities are listed for those that wish to take action and help with the efforts of this
syndrome.
Evaluation: Turnersyndrome.org establishes a fantastic network of information and sources for
women with the syndrome. There is national conference information which many may want to
attend. I found the medical advances timeline to be very unique to this website.

Name of Website: Cystic Fibrous Foundation
URL: http://www.cff.org/aboutcf/
Overview: The Cystic Fibrous Foundation clearly review what the disease is and what the
foundation is all about. One may find news and events about the disease on this website; among
videos and employment opportunities. There is a page for scholarships for people that have the
disease. Cff.org talks about any treatment options or processes that might help people with
Cystic Fibrous. Surprisingly, there is information about trials and research milestones based on
this disease. The ways to get involved in this foundation are endless so just take a look.
Evaluation: Cff.org offers many outstanding programs, scholarships, information, and other
opportunities concerning the disease. This website is not just for adults or parents, it is also for
children too. A tab to check out would have to be the scholarships tabs; who knew there were
scholarships for Cystic Fibrous!
ANNOTATED BIBLIOGRAPHY 6


Name of Website: Kids Health
URL: http://kidshealth.org/parent/medical/genetic/tay_sachs.html
Overview: Kidshealth.org covers various ideas about the Tay - Sachs disease. The disease is
defined and the website goes on to tell us about who may be at risk to get the disease.
Apparently, there is a screening that can be done to see if someone is a carrier; there is
information on how a mother can get a prenatal diagnosis of the disease. Finally, the site
describes the signs and symptoms of a child that may have Tay- Sachs; it tells parents how to
help their children if they were to have the disease.
Evaluation: Kids Health did a fantastic job of covers all aspects of information that someone
would want to know about Tay-Sachs Disease. This web page however, is geared towards
parents more than children. I found it intriguing that parents can get screened to see if they are
carriers of the disease I was unaware of this.

Name of Website: Down Syndrome International
URL: http://www.ds-int.org/home
Overview: This website was designed to connect and give information to people all over the
world about Down syndrome. People with Down syndrome or the family/friends of people with
the syndrome can become members of the website; there is also a fundraising tab where people
can help find ways to raise funds for the cause. Reach Out is a special program that the website
sponsors that focuses on training and working with people that have the syndrome; these people
are in developing countries. There is information on a World Down Syndrome Day which I
ANNOTATED BIBLIOGRAPHY 7

found interesting. People can also find information on the World Down Syndrome Congress and
when the next meeting will be.
Evaluation: This website is very unique it clearly covers various areas of information about
Down syndrome. The website is more centered towards parents or adults of people that have
Down syndrome. Ds-int.org is a great organization that provides many people with information
about Down syndrome and helps people with the disease connect.

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