Course: Rare Disease Scholars 2017-2018

Section outline

Select section Workshop Topics

Workshop Topics

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Please click on each section below to access the materials and resources.
Select section What to Do Before You Come to DC

What to Do Before You Come to DC
Now that you've gotten your hotel reservations, your transportation is arranged, your call shifts are covered, and you have a friend to water the plants, take a few minutes to take the pretest and prepare to tell us a one minute description of your research. Then, get your bag packed with business casual clothes and comfy walking shoes and we'll see you in DC!
- Select activity Questionnaire
  
  Questionnaire Quiz
- Select activity Day 2 Registration (due 10/9)
  
  Day 2 Registration (due 10/9) File
- Select activity Upload your Day 2 Registration form Here
  
  Upload your Day 2 Registration form Here Assignment
- Select activity Elevator Talk Rubric Due 10/15
  
  Elevator Talk Rubric Due 10/15 File DOCX
  
  13.6 KB · Uploaded 10/1/17, 20:40
- Select activity Get YOUR ORCID ID number
  
  Get YOUR ORCID ID number URL
  
  Students must
  
  Mark as done
Select section Introduction to LearnRD Portal

Introduction to LearnRD Portal
- Select activity Editing Your Profile
  
  Editing Your Profile Page
  
  This brief tutorial teaches you how to edit your own profile.
- Select activity Powerpoint of the LearnRD Portal Overview
  
  Powerpoint of the LearnRD Portal Overview File PPTX
  
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  897.7 KB · Uploaded 10/2/17, 10:30
Select section The Fall In-Person Meeting

The Fall In-Person Meeting
We are excited to have you join the Leadership team in Washington DC October 30-31. On Monday, October 30, we will begin at 10am at Children's National (111 Michigan Ave, NW, Washington DC). We are a shuttle ride away from the Red Line Metro.
On Monday, we will be spending the afternoon at the US Capitol meeting with Health Care Advisors to senators and better understand the intricacies of politics, medicine, and rare disease. Then, you can either return to Children's or spend the evening on the Washington Mall with a quick trip to a Smithsonian.
On Tuesday, we will be meeting 9-3 to work in our small groups to set the year goals and identify ways to succeed.
Select section Fall Session: You Have More Time Than You Think

Fall Session: You Have More Time Than You Think
- Select activity Link To "Assess" Your Business
  
  Link To "Assess" Your Business URL
- Select activity Dr. Ottolini's PowerPoint File
  
  Dr. Ottolini's PowerPoint File PPTX
  
  10.9 MB · Uploaded 10/1/17, 20:40
- Select activity Time Diary
  
  Time Diary File DOCX
  
  83.2 KB · Uploaded 10/1/17, 20:40
- Select activity Covey matrix
  
  Covey matrix File DOCX
  
  56.3 KB · Uploaded 10/1/17, 20:40
- Select activity Goal Setting Document
  
  Goal Setting Document File DOCX
  
  37.8 KB · Uploaded 10/1/17, 20:40
Select section Rare Disease Scholar's Launch: Dr. Debra Regier

Rare Disease Scholar's Launch: Dr. Debra Regier
- Select activity Rare Disease Scholar's Program 2018 -2018 Launch: Dr. Debra Regier
  
  Rare Disease Scholar's Program 2018 -2018 Launch: Dr. Debra Regier URL
  
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Select section Biosketch 101: Robin Faria

Biosketch 101: Robin Faria
We KNOW the holidays are a complicated time for everyone. So, this holiday, take an hour to learn more about biosketches (in your own free time!), then join a "call" to discuss your issues with perfecting your biosketch.
- Select activity RDCRN Biosketch by Robin Faria UCLA
  
  RDCRN Biosketch by Robin Faria UCLA URL
Select section NIH FUNDING AKA "Have Paula Find the RIGHT Grant for YOUR Project!"

NIH FUNDING AKA "Have Paula Find the RIGHT Grant for YOUR Project!"
Join Paula as she discusses her ideas for YOUR grant writing. Her fun, interactive approach to grants takes away the fear and gives you help for how to approach what can be an overwhelming process. While she uses the NIH-based funding options as her basis, her writing tips and view has been helpful for ALL grant writers!
- Select activity Paula's Slide Set
  
  Paula's Slide Set File PPTX
  
  Students must
  
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  3.7 MB · Uploaded 12/5/17, 11:10
Select section Rare Disease Grants (K) Awards: Dr. Paula Gregory

Rare Disease Grants (K) Awards: Dr. Paula Gregory
- Select activity Rare Disease Grants (K Awards): Dr. Paula Gregory
  
  Rare Disease Grants (K Awards): Dr. Paula Gregory URL
  
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Select section Genomics and Genetics in Rare Disease Research (OPTIONAL MODULE)

Genomics and Genetics in Rare Disease Research (OPTIONAL MODULE)
THIS IS AN OPTIONAL SESSION FOR PARTICIPANTS ALREADY SAVY WITH GENOMICS OR GENETIC EVALUATIONS.
Take a quick over view of what next generation sequencing is, how it can be used, its limitations, and its benefits to patients and families with rare disorders.
- Select activity Deb Regier's Quick Guide to "does this change mean anything"
  
  Deb Regier's Quick Guide to "does this change mean anything" File DOCX
  
  7.3 MB · Uploaded 10/1/17, 20:40
- Select activity PDF of ACMG Standards and guidelines for the interpretation of sequence variants:
  
  PDF of ACMG Standards and guidelines for the interpretation of sequence variants: File PDF
  
  437.4 KB · Uploaded 10/1/17, 20:40
- Select activity ACMG Incidental Finding Guidelines PDF
  
  ACMG Incidental Finding Guidelines PDF File PDF
  
  425.9 KB · Uploaded 10/1/17, 20:40
- Select activity Next Gen Animations
  
  Next Gen Animations URL
- Select activity Next Gen Animation
  
  Next Gen Animation URL
- Select activity DR's Genomic Tools Overview
  
  DR's Genomic Tools Overview File PPTX
  
  9.5 MB · Uploaded 10/1/17, 20:40
- Select activity Genomics Overview with Deb
  
  Genomics Overview with Deb URL
Select section Certificate Program Outcome Measures: Did the Program Matter?

Certificate Program Outcome Measures: Did the Program Matter?

Not available
Select section Biorepositories (OPTIONAL MODULE)

Biorepositories (OPTIONAL MODULE)
- Select activity Biorepositories....
  
  Biorepositories.... URL
Select section Industry Interactions (OPTIONAL MODULE)

Industry Interactions (OPTIONAL MODULE)
- Select activity Industry and Acadmics: The Industry Perspective
  
  Industry and Acadmics: The Industry Perspective URL
- Select activity Dr. Greg Enns' slides for reference
  
  Dr. Greg Enns' slides for reference File PDF
  
  1.9 MB · Uploaded 10/1/17, 20:40
- Select activity Industry and Academics: The Academic Perspective
  
  Industry and Academics: The Academic Perspective URL
Select section Interacting with Industry: Dr. Chapman & Hemoshear

Interacting with Industry: Dr. Chapman & Hemoshear
- Select activity Interacting with Industry: Dr. Kim Chapman and Brian Wamoff
  
  Interacting with Industry: Dr. Kim Chapman and Brian Wamoff URL
  
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Select section Statistics 101 (October 24)

Statistics 101 (October 24)
In the Fall Preview, take the chance to join a conversation on the role of statistics in designing rare disease research.
- Select activity Biostats Lecture (Backgroun infomration if you want a preview on stats before the lecture)
  
  Biostats Lecture (Backgroun infomration if you want a preview on stats before the lecture) URL
- Select activity Stats PPT as a PDF
  
  Stats PPT as a PDF File PDF
  
  1.3 MB · Uploaded 10/1/17, 20:40
Select section Rare Disease Statistical Methods: Dr. Gary Dallaghan

Rare Disease Statistical Methods: Dr. Gary Dallaghan
- Select activity Rare Disease Statistical Methods: Dr. Gary Dallaghan
  
  Rare Disease Statistical Methods: Dr. Gary Dallaghan URL
  
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Select section Rare to Common: Dr. Marshall Summar

Rare to Common: Dr. Marshall Summar
- Select activity Rare to Common: Dr. Marshall Summar
  
  Rare to Common: Dr. Marshall Summar URL
  
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Select section Rare Disease Career Success: Dr. Mark Batshaw

Rare Disease Career Success: Dr. Mark Batshaw
Join Dr. Batshaw as he discusses his tricks for success in Rare Disease!
- Select activity Rare Disease Grants: Dr Mark Batshaw
  
  Rare Disease Grants: Dr Mark Batshaw URL
  
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Select section The Undiagnosed Disease Network: Dr. Bill Gahl

The Undiagnosed Disease Network: Dr. Bill Gahl
- Select activity The Undiagnosed Disease Network: Dr. Bill Gahl
  
  The Undiagnosed Disease Network: Dr. Bill Gahl URL
  
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Select section An Undiagnosed Disease Program: The Utah Experience

An Undiagnosed Disease Program: The Utah Experience
Select section Mid-Year Discussions

Mid-Year Discussions
This is YOUR chance to vent, rejoice, brainstorm, and in general contemplate where you are at with your research project! Get you call spot ASAP!
Select section Scholar's Choice Month: How Exactly DO I Get Promoted??

Scholar's Choice Month: How Exactly DO I Get Promoted??
Want to contemplate a promotion or at least know what to expect?? The assignment this month is to find out YOUR institutions (or your dream institution where you wan tot work) requirements for tenure and non-tenure tract promotion. Actually understand YOUR tract.
Then, Dr. Mary Ottolini will join us to discuss Educational Portfolios for those that have never heard of one and need one for their promotion! If you DO not need an educational portfolio, OK to skip this webinar and instead spend the 30 minutes optimizing your research section of your CV!
- Select activity PowerPoint Slides of Dr. Ottolini's Presentation
  
  PowerPoint Slides of Dr. Ottolini's Presentation File PPTX
  
  Students must
  
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  4.9 MB · Uploaded 05/15/18, 15:11
Select section Faculty Development

Faculty Development
- Select activity How To Multiply Your Time | Rory Vaden | TEDxDouglasville
  
  How To Multiply Your Time | Rory Vaden | TEDxDouglasville URL
  
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- Select activity Time Management For The Time-Challenged
  
  Time Management For The Time-Challenged URL
  
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- Select activity HOW TO MANAGE YOUR TIME EFFECTIVELY
  
  HOW TO MANAGE YOUR TIME EFFECTIVELY URL
  
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- Select activity How to Get A Promotion
  
  How to Get A Promotion URL
  
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Select section Being a Better Mentor

Being a Better Mentor
- Select activity How do we Better Mentor??
  
  How do we Better Mentor?? File DOCX
  
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  13.6 KB · Uploaded 07/31/18, 10:49
- Select activity Mentoring in the Era of #MeToo
  
  Mentoring in the Era of #MeToo File PDF
  
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  35.5 KB · Uploaded 07/31/18, 10:51
- Select activity Mentoring Millennials
  
  Mentoring Millennials File PDF
  
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  51.1 KB · Uploaded 07/31/18, 10:52
- Select activity Leaders as multipliers
  
  Leaders as multipliers URL
  
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- Select activity Living and working with child-like wonder | Liz Wiseman | TEDxUniversityofNevada
  
  Living and working with child-like wonder | Liz Wiseman | TEDxUniversityofNevada URL
  
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- Select activity Liz Wiseman - The push pull of leadership
  
  Liz Wiseman - The push pull of leadership URL
  
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- Select activity Millennials need a mentor in the workplace | Lauren Hoebee | TEDxTWU
  
  Millennials need a mentor in the workplace | Lauren Hoebee | TEDxTWU URL
  
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- Select activity TEDxOverlake - Karen Russell - Modern Mentoring: The Good, The Bad and The Better
  
  TEDxOverlake - Karen Russell - Modern Mentoring: The Good, The Bad and The Better URL
  
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- Select activity Who inspires you? Why heroes, role models, and mentors matter | Dyan deNapoli
  
  Who inspires you? Why heroes, role models, and mentors matter | Dyan deNapoli URL
  
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- Select activity Mentorship will change the world: Kam Phillips at TEDxCoMo
  
  Mentorship will change the world: Kam Phillips at TEDxCoMo URL
  
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- Select activity Mentoring a Research Lab
  
  Mentoring a Research Lab File DOCX
  
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  1.5 MB · Uploaded 08/6/18, 15:37
Select section Graduation Materials

Graduation Materials
- Select activity Questionnaire
  
  Questionnaire Quiz

Section outline

Please click on each section below to access the materials and resources.