1

Running head: SESSION PROJECT 1 ANNOTATED BIBLIOGRAPHY

Session Project 1: Annotated Bibliography

Tracy Appleget
Ivy Tech Community College

2
SESSION PROJECT 1 ANNOTATED BIBLIOGRAPHY
1. Name of Website: Sickle Cell Disease Association of America
URL: www.sicklecelldisease.org
Overview: This website is for people within a community with Sickle Cell Disease.
The website is a member website for one to join group within their community. The
website offers a newsletter. There is also a link to an online store to purchase
merchandise for Sickle Cell Disease awareness. The website offers links to state
organizations.
Evaluation: This website is designed for people that may already have information
on sickle cell disease. This website is for individuals that want to reach out into the
community and meet and with others with the disease. The website is for those
who want to spread the awareness of sickle cell disease.

2. Name of Website: The National Organization for Albinism and

hypopigmentation
URL: http://albinism.org/
Overview: The website had links to different areas that could give information
regarding albinism. The links for people with albinism, parents of a child with
albinism, and students with albinism. One common topic in each link was the
definition of albinism.

The website also had a link to an online albinism

community. There is also a link for students doing reports on albinism.

Evaluation: I found the information given in the website very good information
albinism. The website focused on different people affected with albinism. I found in
the website how people of color are affected with albinism. The information in the
website was helpful.

3
SESSION PROJECT 1 ANNOTATED BIBLIOGRAPHY
3. Name of Website: Cystic Fibrosis Foundation
URL: http://www.cff.org/
Overview:

The website gave many links to different areas of the website. The

links included information about Cystic Fibrosis. The foundation, living with cystic
fibrosis, treatments, research overview, and get involved. The link living with Cystic
Fibrosis had information on how to care for infants with C.F. Along with this there is
also information on patient assistance resources. Following the link will bring a
person to information on getting health coverage while having CF. The website also
offers was for one to become a member in the organization. There is a easy to use
link on the left side of the page so that one could find a charter near the area that
they live in.
Evaluation: This so far would be my favorite website. I found the videos to be
interesting. The website is packed with helpful information. The information not
only is good for the person with C.F., but also anyone caring for a person with C,F.

4. Name of Website: National PKU Alliance

URL: www.NPKU.org
Overview: The home page of the website states that the Alliance works to improve
the lives of families and individuals associated with PKU. They plan to do so with
research, support, education, and advocacy. ON the home page there are links for
Resources. These resources are finding clinics, what to do if it is a new diagnosis. I
looked at this link and found helpful hints on how to travel and eat. There are also
links of the different acts on the website. The links help explain the patients rights.
There is also an act trying to get medical food covered on insurance.

4
SESSION PROJECT 1 ANNOTATED BIBLIOGRAPHY
Evaluation: It is a nice website for those who are recently diagnosed with PKU.
The website is packed with information. The website was easy to go through. The
lack of graphics made the website seem dry, but the organization of the website
made it easy to look over.

5. Name of Website: National Tay-Sachs & Allied Diseases Association

URL: www.ntsad.org
Overview: the website is geared toward families. The homepage of the website is
packed with information. On the bottom of the home page there is a definition of
what Tay-Sachs is. On the side bar of the home page there is a link to the websites
twitter, and Facebook accounts. On the home page there is a link to labeled
Prevent. The link brings you to a page regarding genetic screening. There is no
cure so the only way to save heart ache is by preventing the disease through
genetic screening. There are many links to different information. The footer on
each page contains the contact information of the organization.
Evaluation: The website was packed with information for families dealing with the
disease. I found that the pictures and graphic on the website were interesting to
look at. I would recommend with this website to a family that is dealing with this
type of disease.

6. Name of Website: American Association for Klinefelter Syndrome Information

and Support
URL: http://www.aaksis.org/
Overview: the website is slow to load. There are links on each page for Donations,
Support, Contact, Education, about, Visitor Center, and Home. The website is a

5
SESSION PROJECT 1 ANNOTATED BIBLIOGRAPHY
national volunteer association with the mission of education, support research and
understanding of 47 XXY and it variants. AAKSIS is govern by a board of directors
that can be contacted from the contact link. The website states that 1 in 500 makes
born will have this trait. From the education link there is contact information for
American Association of Clinical Endocrinologists.
Evaluation: This is a good website if you only are looking for a brief overview of
Klinefelter. This would be a good website to start with. At the bottom of the page
there is a link marked links. When this link is followed you are on a page with many
resources for people needing information for Klinefelter and other diseases.

7. Name of Website: Huntington s disease Society Of America

URL: http://www.hdsa.org/
Overview: The home page of the website is packed with information. The events
that are listed on the home page are recent. There is news regarding Huntingtons
disease that is as recent as the past month. There are links to different researches
that have been done. There are also links to grant applications. Within the link
Living with HD there is information on HD care and advocacy.
Evaluation: This is a good website for a person wanting to learn about the
disease. This website is also a good place to start for a person wanting to do
research on Huntingtons disease.

8. Name of Website: Mayo Clinic

URL: http://www.mayoclinic.org/diseases-conditions/triple-xsyndrome/basics/definition/CON-20033705

6
SESSION PROJECT 1 ANNOTATED BIBLIOGRAPHY
Overview: Mayo Clinic is a go to website to find information on many diseases.
The triple X syndrome is defined by the Mayo Clinic Staff. On the webpage you can
follow the links to learn more about the symptoms.
Evaluation: This is a good website to get a solid definition of what the disease is.
There are no links to outside sources or resources for people living with the disease.

9. Name of Website: Turner Syndrome Foundation

URL: http://www.turnersyndromefoundation.org/
Overview: This is a great website for educators, and families with a child living
with Turner Syndrome. There are many links to outside sources. The home page is
packed with information for patients, educators, physicians and those doing
research. There are many links in each link. Under the health concern link there
are twenty-two more links to different health concerns people living with turners
deal with.
Evaluation: This websites design and graphics make reading through it easy.
There are many photos on the pages making it a good experience to read through
the information. This is a great website to keep in case there are children
introduced into our classroom.

10. Name of Website: National Association for Down syndrome

URL: www.nads.org
Overview: What was first noticed on this page is that there is a link to read the
website in Spanish. There are many links for information regarding Down syndrome
research and the organization itself. There is a fact sheet where you can follow a
link to read information on Down syndrome. There is also a gallery link to look at

7
SESSION PROJECT 1 ANNOTATED BIBLIOGRAPHY
photos of individuals with Down syndrome. Along with information regarding the
organization one can find links to local support groups.
Evaluation: This is a great website for teachers, families and individuals wanting
more information about Down syndrome. The pages are packed with information.
The website is easy to read with a limited amount of photos on each page. Down
syndrome is explained in detail on the website with learning and develop also
highlighted in the subtitles.