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Lesson 5


Communicating about Rare Diseases

Graphic showing outlines of different people connected by dotted lines

Evaluate


At a Glance

Overview

Lesson 5 gives students the opportunity to reflect on what they have learned about rare diseases and scientific inquiry during this supplement. Students role-play staff members of a patient-support organization and are tasked with creating informational posters for the public about Marfan syndrome and childhood leukemia. After students create the posters, they evaluate another poster for a different disease. Finally, students return to the reality TV show scenario that began the supplement. They revisit their initial ideas about rare disease and their attitudes toward people affected by them. They reexamine their answers to the questions about rare diseases posed in Lesson 1 and discuss how their thinking has changed.

Major Concepts

  • Diseases have three main causes:
    – genetics
    – environmental exposure
    – infectious agents
  • Rare diseases may become common, and common diseases may become rare.
  • Some rare diseases can be cured, while many others can be managed through treatment.
  • People with rare diseases must sometimes cope with the stigma associated with their condition.

Objectives

After completing this lesson, students will have

  • revisited their preconceptions about the nature of disease in light of scientific conceptions,
  • summarized information about childhood leukemia and Marfan syndrome, and
  • considered their feelings about people affected by rare diseases.


Teacher Background

Consult the following sections in Information about Rare Diseases and Scientific Inquiry:
2.0 The Impact of Genomics on Rare Diseases
3.0 Rare Infectious Diseases
4.0 Rare Diseases Caused by Environmental Toxins
5.1 Necrotizing Fasciitis
5.2 Marfan Syndrome
5.3 Childhood Leukemia


In Advance

Web-Based Activities
Activity Web Component?
1 No
2 Yes
Photocopies, Transparencies, Equipment, and Materials
Photocopies and Transparencies
Activity 1: Creating an Informational Poster
1 transparency and 1 copy of Master 5.1 for each student pair
1 copy of Master 5.2 for each student pair addressing Marfan syndrome
1 copy of Master 5.3 for each student pair addressing childhood leukemia
1 transparency and 1 copy for each student pair of Master 5.4
1 copy of Master 5.5 for each student pair
Activity 2: Reflecting on Rare Diseases
For Classes Using the Web-Based Version
1 copy of Master 5.6 for each student
For Classes Using the Print-Based Version
1 copy of Master 5.6 for each student
1 transparency of Master 5.7
Equipment and Materials
For Activity 1, students will need chart paper and colored marking pens.
For Activity 2, Web-based version, students will need computers with Internet access.
Preparation

Activity 1

Gather chart paper and colored marking pens for each student pair. Make photocopies and transparencies.

Activity 2

WWW Logo

For classrooms using the Web version, verify that the computer lab is reserved for your class or that classroom computers are set up for the activities. Refer to Using the Web Site for details about the site. Check that the Internet connection is working properly.

Log on to the Web Portion of Student Activities section of the site at

http://science.education.nih.gov/supplements/rarediseases/student

Select “Lesson 5: Communicating about Rare Diseases” so students can begin the activity right away.


Procedure

Activity 1: Creating an Informational Poster

Estimated time: 50 minutes

Note: This is an Evaluate lesson. It’s not designed to teach new content but rather to give you a chance to assess how well students have learned the major concepts about rare diseases and scientific inquiry.

  1. Begin by explaining that in this final lesson of the supplement, students will play the roles of staff members working for an organization that informs and support patients with rare diseases and their families. Explain the following:
    • Many rare diseases have support groups that raise awareness and money to support research about the disease.
    • The task is for pairs to prepare informational posters that explain important aspects of a rare disease to patients, family members, and other interested people.

    Students may feel unqualified to prepare informational posters about rare diseases. You can explain that the posters will deal with the rare diseases they have been studying. Furthermore, the goal of the poster is to communicate information to the public, so the posters should use language that everyone can understand.

    NSES Logo

    Content Standard C: Disease is a breakdown in structures of functions of an organism. Some diseases are the result of intrinsic failures of the system. Others are the result of damage by infection by other organisms.

  2. Arrange students into pairs again. Explain that each pair will create a poster about childhood leukemia or Marfan syndrome. Assign half of the pairs to childhood leukemia and the other half to Marfan syndrome. Explain that after each pair creates a poster, they will evaluate a poster about the other rare disease.

    You may allow student pairs to select the disease they prefer. If selections heavily favor one disease over the other, you may need to instruct some pairs to switch diseases to maintain a balance between the two.

  3. Exclaimation mark
    Tip from the field test: If your classroom has the technical capacity, consider allowing students to create a PowerPoint presentation instead of a poster.

    NSES Logo

    Content Standard A: Students should base their explanations on what they observed, and as they develop cognitive skills, they should be able to differentiate explanation from description—proving causes for effects and establishing relationships based on evidence and logical argument.

  4. Display Master 5.1, Guidelines for the Poster, and give each pair a copy to use as a reference. Explain that the handout lists the types of information that should be in the poster. Briefly go over the items on the handout and answer any questions students have.

    Make sure that students have access to the notebooks that contain their work from previous lessons. This work will help students complete the first part of the poster.

Note: The purpose of this activity is to assess students’ learning from the previous lessons. Therefore, do not allow students to conduct a research project using the Internet or other outside resources.

  1. Explain that the second part of the poster will contain a brief summary of a recent clinical trial or research study about the disease. Give each student pair one copy of Master 5.2, Research Study on Marfan Syndrome, or Master 5.3, Clinical Trial on Childhood Leukemia, depending on student preference.

    These handouts contain the information needed to complete the second part of the poster.

    Marfan study

    Students should conclude that the drug losartan helped keep the aortas of mice with the Marfan mutation at a healthy size. This suggests that the drug also may be able to help humans with Marfan syndrome.

    Leukemia clinical trial

    Students should conclude that the survival rate of patients who received drug combination therapy with brain irradiation was essentially the same as that of patients who received combination drug therapy alone. This means that patients can be spared the brain irradiation and the risk of its harmful side effects.

  2. Display Master 5.4, Evaluation Rubric. Explain that student pairs will use it to evaluate the poster created by another pair. Briefly go over the criteria on the handout.

    It’s important to provide the pairs with evaluation criteria before they create the posters. Otherwise, they may feel that it is unfair to be given this information after it’s too late to revise the posters.

  3. Make available to pairs chart paper and colored marking pens. Explain that pairs will first make an outline of the information they plan to include on the poster. When they are satisfied with it, they should transfer it to a piece of chart paper.
  4. As the student pairs work, circulate around the room and assign a code number to each poster.

    Allow students at least 15 minutes to complete this task. The code number allows you to know which students worked on which poster and prevents the students from knowing who created the poster they will evaluate.

  5. After student pairs have completed the posters and each has been assigned a code number, collect all posters.

    Place the posters about childhood leukemia in one pile and those about Marfan syndrome in another pile.

  6. Give each pair a poster to evaluate. Make sure that each pair evaluates a poster about the rare disease they did not create a poster for.

    If multiple classes will be making posters, consider having one class serve as peer reviewers for another class.

  7. Give each student pair one copy each of Master 5.4 and Master 5.5, Poster Score Sheet.

    Give students about 20 minutes to complete the evaluation, and then collect the score sheets. Of course, the students’ explanations for their scores are more revealing than the numbers themselves.

Activity 2: Reflecting on Rare Diseases

Estimated time: 50 minutes

  1. Remind the class about the producer of the reality TV show who wanted to film a student with a rare disease joining the class. Instruct students to look in their notebooks where, in Lesson 1, they wrote down questions they would ask the student with the rare disease.
WWW Logo

(For print version, skip to Step 2-p.)

In classrooms using the Web-based activity:

2-w.

Explain that student pairs will go to their computers and watch a video made by a young man with Marfan syndrome. Instruct students to keep in mind the questions they posed and the feelings they expressed about rare diseases and the people affected by them.

Computers should be at the URL:

http://science.education.nih.gov/supplements/rarediseases/student

This is a menu page that contains a link for this activity.

3-w.

Direct students to their computer stations and instruct them to click on “Lesson 5: Communicating about Rare Diseases.”

The video is about 12 minutes long and illustrates the story of Kevin, a young man who has Marfan syndrome.

4-w.

After they have watched the video, allow students to express their feelings about it.

If students focus on feelings of sorrow or pity, call attention to comments made by Kevin’s mother about how important he is to their family and to those around him. Marfan syndrome certainly has affected him, but not only in negative ways. It has helped Kevin direct his life.

5-w.

Ask for volunteers to read from their notebooks

  • a question they wanted to ask the student with the rare disease or
  • a feeling they expressed about having the student join the class.

If their thinking has changed since the beginning of the supplement, ask them to explain how and why.

The point of this step is to revisit questions, concerns, and fears about people with rare diseases that students expressed at the start of the supplement. We hope that after learning about rare diseases and hearing from people who live with them, students become more empathetic and sensitive to those who cope with rare diseases.

6-w.

Explain that you want to conclude the supplement by revisiting the students’ initial ideas about disease. Give each student one copy of Master 5.6, What Do You Think Now? Instruct students to answer each question on the handout.

Give students 5–10 minutes to answer the questions. Students may recognize that they answered these questions during the Lesson 1. Answering the same questions gives them the opportunity to reflect on how their thinking has changed as a consequence of participating in the supplement.

7-w.

Have students retrieve the copy of Master 1.2, Thinking about Disease, that they filled out in Lesson 1. Instruct students to compare the answers they just wrote with those on Master 1.2.

8-w.

After students have had a chance to compare both sets of answers, ask the following:

  • “Have any of your answers changed since Lesson 1?”
  • “If so, what caused your thinking to change?”

Allow different students to respond. Some of the students’ answers to the questions will probably have changed. Even if some students’ attitudes are essentially the same, the knowledge gained during the supplement may influence their opinions later, after they have had more experiences.

End of Web-based activity.




In classroom using the print version of the activity: open book

2-p.

Display Master 5.7, Another Letter from the Producer. Ask for a volunteer to read it aloud to the class.

3-p.

Remind students that during Lesson 1, they wrote in their notebooks some questions they would ask a student with a rare disease who was about to join the class. Instruct students to look back at the questions they posed and the feelings they expressed about sharing their classroom with this student.

4-p.

Explain that you wonder whether participating in the lessons in this supplement has caused anyone to change their attitude about people with rare disease. Ask for volunteers to read from their notebooks

  • a question they wanted to ask the student with a rare disease or
  • a feeling they expressed about having the student join the class.

If their thinking has changed since the beginning of the supplement, ask them to explain how and why.

The point of this step is to revisit questions, concerns, and fears about people with rare diseases that students expressed at the start of the supplement. We hope that after learning about rare diseases and hearing from people who live with them, students become more empathetic and sensitive to those who cope with rare diseases.

5-p.

Explain that you want to conclude the supplement by revisiting the students’ initial ideas about disease. Give each student one copy of Master 5.6, What Do You Think Now? Instruct students to answer each question on the handout.

Give students 5–10 minutes to answer the questions.Students may recognize that they answered these questions during the Lesson 1. Answering the same questions gives them an opportunity to reflect on how their thinking has changed as a consequence of participating in the supplement.

6-p.

Have students retrieve the copy of Master 1.2, Thinking about Disease, they filled out in Lesson 1. Instruct them to compare the answers on Master 5.6 with those on Master 1.2.

7-p.

After students have had a chance to compare both sets of answers, ask the following:

  • “Have any of your answers changed since Lesson 1?”
  • “If so, what caused your thinking to change?”

Allow different students to respond. Some of the students’ answers to the questions will probably have changed. Even if some students’ attitudes are essentially the same, the knowledge gained during the supplement may influence their opinions later, after they have had more experiences.


Lesson 5 Organizer: Web Version

WWW Logo
Activity 1:Creating an Informational Poster
Estimated time: 50 minutes
Page and Step
Explain that students will play the roles of staff members working for a patient support group. Student pairs will prepare informational posters for the public. Page 125
Step 1
Arrange the class in pairs again. Explain that each pair will make a poster about a rare disease (half will address Marfan syndrome and half will address childhood leukemia) and then evaluate another pair’s poster. Page 126
Step 2
Display Master 5.1 and give each pair a copy. Go over the master and answer students’ questions. Page 126
Step 3
Transparency

Master
Explain that the second part of the poster will contain a summary of a clinical trial or research study. Give each pair a copy of either Master 5.2 or Master 5.3, depending on student preference. Page 126
Step 4
MAster
Display Master 5.4, and explain that students will use it to evaluate another pair’s poster. Page 127
Step 5
Transparency
Give pairs chart paper and marking pens.
  • Instruct students to first make an outline of the poster, then transfer it to the chart paper.
  • Circulate around the room and assign a code number to each poster.
  • When students have finished, collect the posters.
Page 127
Steps 6–8
Give each pair a poster of the disease they did not work on. Page 127
Step 9
Give each pair a copy of Masters 5.4 and 5.5. After students have completed the work, collect the score sheets. Page 128
Step 10
Master


Activity 2: Reflecting on Rare Diseases
Estimated time: 50 minutes
Page and Step
Remind the class about the reality TV scenario from Lesson 1. Instruct students to retrieve the questions and feelings about the scenario they recorded in their notebooks. Page 128
Step 1
Tell students to watch a video on their computers made by a young man who has Marfan syndrome (at “Lesson 5: Communicating about Rare Diseases”). Afterwards, allow students to express their feelings about the video. Pages 128
Steps 2w–4w
WWW Logo
Ask volunteers to read from their notebooks
  • a question they wanted to ask the student with the rare disease or
  • a feeling they expressed about having the student join their class.
If their thinking has changed since the beginning of the supplement, ask them to explain how and why.
Page 129
Step 5-w
Revisit students’ initial ideas about disease.
Give every student a copy of Master 5.6, and instruct them to answer the questions on it.
Page 129
Step 6-w
Master
Have students retrieve their copies of Master 1.2 and compare these answers with those on Master 5.6. Page 129
Step 7-w
Conclude by asking,
  • “Have any of your answers changed since Lesson 1?”
  • “If so, what caused your thinking to change?”
Page 129
Step 8-w


Transparency = Involves making a transparency.     Master = Involves copying a master.

WWW Logo
= Involves using the Internet.

Lesson 5 Organizer: Print Version

WWW Logo
Activity 1: Creating an Informational Poster
Estimated time: 50 minutes
Page and Step
Explain that students will play the roles of staff members working for a patient support group. Student pairs will prepare informational posters for the public. Page 125
Step 1
Arrange the class in pairs again. Explain that each pair will make a poster about a rare disease (half will address Marfan syndrome and half will address childhood leukemia) and then evaluate another pair’s poster. Page 126
Step 2
Display Master 5.1 and give each pair a copy. Go over the master and answer students’ questions. Page 126
Step 3
Transparency


Master
Explain that the second part of the poster will contain a summary of a clinical trial or research study. Give each pair a copy of either Master 5.2 or Master 5.3, depending on student preference. Page 126
Step 4
Master
Display Master 5.4, and explain that students will use it to evaluate another pair’s poster. Page 127
Step 5
Transparency
Give pairs chart paper and marking pens.
  • Instruct students to first make an outline of the poster, then transfer it to the chart paper.
  • Circulate around the room and assign a code number to each poster.
  • When students have finished, collect the posters.
Page 127
Steps 6–8
Give each pair a poster of the disease they did not work on. Page 127
Step 9
Give each pair a copy of Masters 5.4 and 5.5. After students have completed the work, collect the score sheets. Page 128
Step 10
Master


Activity 2: Reflecting on Rare Diseases
Estimated time: 50 minutes
Page and Step
Remind the class about the reality TV scenario from Lesson 1. Instruct students to retrieve the questions and feelings about the scenario they recorded in their notebooks. Page 128
Step 1
Display Master 5.7, and ask a volunteer to read it aloud. Ask students to reflect on the questions and feelings they wrote about in their notebooks during Lesson 1. Page 130
Steps 2-p
and 3-p
Transparency
Ask volunteers to read from their notebooks
  • a question they wanted to ask the student with the rare disease or
  • a feeling they expressed about having the student join their class.
If their thinking has changed since the beginning of the supplement, ask them to explain how and why.
Page 130
Step 4-p
Revisit students’ initial ideas about disease. Give every student a copy of Master 5.6, and instruct them to answer the questions on it. Page 130
Step 5-p
MAster
Have students retrieve their copies of Master 1.2 and compare those answers with the ones on Master 5.6. Page 130
Step 6-p
Conclude by asking,
  • “Have any of your answers changed since Lesson 1?”
  • “If so, what caused your thinking to change?”
Page 131
Step 7-p


Transparency = Involves making a transparency.     Master = Involves copying a master.

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