Projects & Opportunities

Public Speaker

End: TBD

Share Your Weight Management Experiences 

We have a special request for an adolescent speaker that has experience with chronic weight management/obesity (i.e. liraglutide, semaglutide, other) and has had success with weight loss with treatment.

Additional criteria, 

 

  1. This youth speaker may share their voice at either a November 1st event or a Grand Rounds presentation on December 7th.  

  2. The speaker could be recorded or virtual.  

  3. Their speaking portion would be no more than 10 minutes and include their own personal story.  

  4. Trial experience preferred.  

  5. Must live in the US. 

If you or anyone you know might be interested, please contact

Amy Ohmer at 

amyohmer@icanresearch.org.  

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End: Closing Soon

Tell Doctors What You Want Them to Know 

Tell Doctors what you want them to know.

 

Take the survey to help all kids (and doctors) around the world.    

Click the button below to take the survey, or scan the QR code above.

The survey won't be open for long - so hurry- and make sure your voice is included in this terrific project!

Survey Code is: 06019

Young Performer

End: Closed

iCAN Needs Your Voice! 

Are you a young person living with hemophilia? 

If so, please contact Amy Ohmer, amyohmer@icanresearch.org

for the chance to share your voice. 

 

More details will be provided at a later date.

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Summit: July 11 - July 15, 2022

 Register for the 2022 iCAN Summit presented by Jumo Health 

Join us at the 2022 iCAN Summit presented by Jumo Health in Lyon, France!

Travel to France, share your expert voice, engage with global leaders, and make friends around the world.

This event is designed to provide children and young people with an invaluable opportunity to learn from one another, and to network with leading professionals from around the globe, while being immersed in science, medicine, advocacy, innovation, leadership, and more.

Virtual Attendees can register through July 11th.

In-person attendees should contact info@icanresearch.org

Click HERE to learn more about the summit!

Scientist Using Microscope

Applications Due: June 17, 2022

 Undergraduate Pediatric Gene Therapy & Medical Ethics Internship 

The Pediatric Gene Therapy & Medical Ethics (PGTME) and the Compassionate Use and Preapproval Access (CUPA) working groups, housed in the NYU Grossman School of Medicine Division of Medical Ethics, are thrilled to announce our undergraduate internships for the fall 2022 semester!

Undergraduate internships provide a paid opportunity for rising juniors and seniors to be exposed to real-world medical ethics research in a fast-paced academic setting. 

 

We encourage applications from candidates who will contribute to the diversity of the NYU Langone Health community and support our commitment to access and inclusion, as we seek to support the diversification of the bioethics workforce through early exposure of students to ethical issues and careers. Previous ethics coursework/experience is not required, but applicants should have an interest in medicine, public health, bioethics, genetics/genomics, rare diseases, philosophy/history of medicine, medical decision-making, or patient advocacy. Applicants must be fluent in written and spoken English and either be a US citizen or hold a working visa.

 

This is a wonderful opportunity for a student to work on a collaborative team of bioethicists, clinicians, patients and patient advocates, and members of the biopharmaceutical industry. For 10 hours per week, the intern will assist with research and administrative duties under the supervision of a working group project manager. Interns will become familiar with pertinent and real-world ethical issues and will hone their own research capabilities. Interns will also learn about potential careers and opportunities in the broader field of bioethics. 

 

Applicants should submit the following to cara.hunt@nyulangone.org by JUNE 17th @ 11:59 PM EDT:

 

1) Resume/CV

2) 1-page statement of interest

3) Writing sample of up to 4 pages (bioethics or health-related topics encouraged)

 

Please direct all questions to Cara.Hunt@nyulangone.org.

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 Help create a digital game on Pandemics 

Last January the European project Science4Pandemics was launched. This three-year project is led by Begonya Nafria, Coordinator of the KIDS Barcelona YPAG at Sant Joan de Déu Research Institute (IRSJD), with support from EIT Health. The main aim is to educate citizens, targeting the adolescent population in particular, in health education, focusing on infectious diseases and on the prevention and management of pandemics. All of us are aware of COVID-19, but beyond this particular pandemic there are other infectious diseases in the world, behaving in an epidemic or endemic way.

We know that sometimes health concepts and information related to health and diseases can be difficult to understand. For that reason, we are aiming to create a digital game, to make learning about infections more fun!

We are now in the moment of creation of the game and we need your help to know what you already know about pandemics and infectious diseases. We want to create an interesting game for young people (not too boring, not too complicated) from which you can also learn. At the same time, we need you to perform health research in pandemics, involving you in projects in which providing your opinion can help us learn more about prevention and management of pandemics. Do you want to help us?

 

If you have from 12 to 18 years old, you are welcome to answer the questionnaire!

English version: https://bit.ly/science4pandemics_eng

Spanish versión:  https://bit.ly/science4pandemics_es

Portuguese version: https://bit.ly/3Co6sss

 

In this video Dr. Quique Bassat, principal co-researcher on Science4Pandemics project and researcher on pandemics in Instituto de Salud Global de Barcelona (ISGlobal) principal co-investigator presents the questionnaire:

English version: https://www.youtube.com/watch?v=PPzSPUJhzOw

Spanish version: https://www.youtube.com/watch?v=5kohUcEI-Lc

Virtual Reality Headset

Closed: May 26, 2022

The FDA Wants To Hear Your Experience with Virtual Reality

The FDA is requesting 1-2 pediatric patients to give a 10-minute presentation, sharing their experience/exposure in using Virtual Reality (VR) devices as either a treatment or augmenting treatment, on July 12, 2022, during the PEAC meeting on Augmented Reality (AR) & Virtual Reality (VR) Medical Devices.

 

We are looking for 1-2 patients to present at the virtual PEAC meeting who are:

  • willing to share their experience/exposure in using VR devices either as a treatment or augmenting treatment,

  • have at least 3 months of device experience,

  • are geographically located in the U.S. (to minimize time zone challenges) and

  • can commit to participate no later than Thursday, May 26th.

 

The FDA has no preference for pediatric patients of a certain age or gender.  All are welcome to apply.  Email info@icanresearch.org today 

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End: June 3, 2022

 Present Your Research at the 2022 Annual Southeastern Pediatric Research Conference 

Calling iCAN Youth Members -

Are you interested in presenting your research?

 

Then the 2022 Annual Southeastern Pediatric Research Conference is the perfect opportunity for you!

Click HERE to learn more about registration and submissions!

Click HERE to download the flyer.

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March 18 - April 22, 2022

Pursue Your Dreams through the #RAREis Scholarship Fund

The #RAREis Scholarship Fund was established in 2020 to help young adults with rare diseases to pursue their dreams through education. Thanks to the support of the #RAREis program by Horizon Therapeutics, The EveryLife Foundation is pleased to announce its third year of the #RAREis Scholarship Fund, a scholarship dedicated to the rare disease community. The #RAREis Scholarship Fund will award up to 53 $5,000 scholarships for the Fall 2022 semester. The scholarship application is open today, March 18 through April 22, 2022 at rarescholarship.org

The #RAREis Scholarship is available to applicants who are: 

  • Over the age of 17 

  • Residents of the United States 

  • Diagnosed by a physician as having any form of rare disease regardless of treatment status. Undiagnosed patients are also encouraged to apply.  

  • Must be planning to enroll full-time or part-time in undergraduate or graduate study at an accredited two- or four-year college, university, or vocational-technical/trade school for the Fall 2022 semester. There is no minimum amount of credit hours to be part-time.

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End: March 19, 2022

 Join iCAN & Friends for

Ask the Experts! 

Join iCAN and friends on Saturday, March 19th at 10:00 a.m. EST at ‘Ask the Experts’. This session will focus on Heart Disease.  

 

To register and to receive your zoom link, visit www.iCANResearch.org/events

 

This is a free 1 hour zoom session and kids can bring friends to join in.  It’s a great time for young people to meet experts, share ideas, talk about important topics, and have fun connecting.  

 

If you have questions on the event, please send them to info@icanresearch.org and we will help to get you started.  

Signing a Contract

Ends: January 27, 2022

Give YOUR Feedback on a NEW iCAN Survey Today!

Help one of our amazing sponsors by providing YOUR feedback on our survey. 

The two surveys are very brief (estimated between 3-5 minutes to complete) and can be taken while you look through two brand-new patient booklets for "Understanding Cancer". 

One booklet is green and will be given to young patients and the other booklet is brown and that will be given to older teen patients. 

To make sure that the booklets are helpful, we want to hear from you.  All questions are anonymous so you can be assured that the feedback left can be open and honest.  

 

iCAN Survey links are below and please take BOTH surveys to complete the project.  

 

iCAN Booklets are in the attachments for review before taking the survey.  

 

Survey 1:  Understanding Cancer 

Booklet 1

https://www.surveymonkey.com/r/NSF9VLM

 

Survey 2: Understanding Cancer 

Booklet 2

https://www.surveymonkey.com/r/NRLRN2S

 

We need to receive feedback on BOTH SURVEYS no later than Friday, January 28th 2022 by noon.  This is a great way to help lead iCAN and share your knowledge to make it better for all young people.  Thank you for helping!  #iCANMakeADifference

 

Any questions?  Please reach out to amyohmer@icanresearch.org.  Thank you!

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Ends: December 27, 2021

 The MRCT Center Wants to Hear from YOU! 

Calling iCAN Youth Members -

The Multi-Regional Clinical Trials Center wants to hear from YOU about your experiences with Clinical Trials!

The MRCT Center would like to hear from iCAN Youth Members about their experiences with Clinical Trials for their next event! This opportunity would consist of being recorded via zoom with video on to answer a series of questions about your experiences with Clinical Trials. The questions will be provided beforehand so iCAN Youth Members are aware of what they will be asked.

If you are interested in this opportunity, please email info@icanresearch.org with the subject of the video being "Yes, I am interested in participating in the MRCT's video interview"

Any questions?  email info@icanresearch.org

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Ends: December 4, 2021

Sign - Up For Monthly "Ask the Experts" 

Calling All iCAN Youth Members -

Dr. Anthony Chang and friends have a very exciting MONTHLY series of events for YOU!  Bring a friend, tune in and share your ideas about what you want to do in research, science, innovation and technology.  

Each month, iCAN and Dr. Chang will highlight a new topic for kids around the world to discuss and participate in fun sessions.  

Please note, some sessions require advance registration to give plenty of time to have items mailed to attendees.  Be sure to register for all sessions to make sure you are on the list!  

Any questions?  email info@icanresearch.org

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Ends: November 30th, 2021

We are seeking (1) iCAN Youth Member to share their experience (15-20 minutes) of participating in Clinical Research for the virtual class; "Clinical Drug Development", Led by Dr. Collin Hovinga.  This will include any experience that the Youth Member has on agreeing to participate in clinical research, why they chose to participate, what the overall experience was like and any advice that they might have to future researchers about working with children/young people.  

 

To learn more about Professor Hovinga and his work through iACT and the University of Texas - Austin, please click this link:

https://www.iactc.org/team-member/collin-hovinga/

 

The date for the speaking event is flexible and the youth may choose from any Monday in November at 6:00 p.m. Central. 

 

We will fill this opportunity on a first come, first serve basis - so please let me know as soon as possible at amyohmer@icanresearch.org.  

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Ends: October 30th, 2021

iCAN's very own Youth Member Olivia has been selected for the final round of voting for

Rare Artist 2021!

To help spread awareness of supporting our young artists and to vote for Olivia during the month of October, please visit: www.rareartist.org

Directions on How-To vote, visit www.RareArtist.org and complete registration.* You can register using your phone number or email.

  1. *Registration verifies that each person is voting once. You will be prompted to verify your email or phone number to vote.

 

  1. Once you are logged in, you will see the top 20 finalists and can select your favorite pieces.

  2. Click on any artwork to open the artist’s profile. In the artist profile, you can learn more about them, including their name, rare disease, and artist statement (their story).

  3. To view a larger image of the artwork, click on the artwork again in the artist profile.

  4. To vote for a piece, click the purple “vote” box under the artwork.

  5. You may vote for 12 pieces total, with a maximum of 3 votes per age group. You can only vote for each art piece one time.

 

  1. You may log in at any point during October to view your votes. Votes are not publicly displayed. Awardees will be announced the second week of November.

To learn more about EveryLife Foundation's Rare Artist Program and Olivia, click here.

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Ends: October 2nd at 11:00AM

Sign Up for Ask the Experts on Big Dreams in Biomedicine

Calling All iCAN Youth Members -

Join Dr. Anthony Chang and special guest Dr. Arlyne Simon for an exciting session of Ask the Experts on Big Dreams and Biomedicine.

 

Dr. Arlyne Simon is a patented inventor, biomedical engineer, children's author, and entrepreneur.

 

Bring a friend, tune in and share your ideas about what you want to do in research, science, innovation and technology.  

Each month, iCAN and Dr. Chang will highlight a new topic for kids around the world to discuss and participate in fun sessions.  

Be sure to register for all sessions to make sure you are on the list!  

Go to our Videos page to view this session!

Any questions?  email info@icanresearch.org

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Ends: October 24, 2021

KIDS Barcelona invites you to share your voice!

One young member of KIDS Barcelona is working with college colleagues about antibiotic resistance.

You can help!

Take this 5 minute survey:

https://forms.gle/Cbn1p1NKBP3fLCvB9

Any questions? Email info@icanresearch.org

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Ends: July 19th, 2021

Do you have expertise on living with a heart condition?  

Calling All iCAN Youth Members -

The FDA is seeking two youth members and a young adult to share insight to living with a special medical condition.  Details are included on the link below. 

To learn more and sign up to participate, please send us an email at info@icanresearch.org.  

Hurry, this closes July 19th. 

2021 Summit Flyer FINAL 5.4.21 AO Confer

Ends: July 16th, 2021

Register to Attend the "Jumo Health Presents the Virtual 2021 iCAN Summit!"

Calling All iCAN Youth Members -

Registration is OPEN for the Jumo Health Presents the Virtual 2021 iCAN Summit to be held online from July 12th- July 16th, 2021.  Free registration is available by visiting www.icanresearch.org.

All kids are welcome to attend!  

Register by June 1st and you will be eligible to receive fun conference materials mailed to your home.  

Any questions?  email info@icanresearch.org

iCAN Youth Council Leader Position Appli

Ends: March 24th, 2021

iCAN Youth Council Leadership Position is CLOSED

Are you interested developing into a leader at iCAN?  Do you like to help others?  Are you seeking new experiences to help your community and the greater pediatric healthcare network of research, science, innovation, advocacy and more?  Then you might be interested in becoming a iCAN Youth Council Leader.  

To submit your nomination for either yourself or an interested chapter representative, send an email to  info@icanresearch.org

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Ends: January 30th, 2021

FDA Needs Kid Thoughts on Living with Rare Conditions

If you have been diagnosed with a rare condition and want to share your voice in a specially created video to help others understand what it is like to be a kid living with a challenging medical condition, than this is for you!  

The US Food and Drug Administration (FDA) has invited iCAN kids living with Rare Conditions to share their story in a video to be shown throughout the FDA 

To participate, please send an email to info@icanresearch.org with 'FDA Rare Conditions Video' in the subject line, and your name, age, medical condition in the email. We will reach out to you to help arrange a date and time for recording your expert patient video.  

Any questions?  email info@icanresearch.org

Virtual Reality Device

Due: February 18th, 2021

Looking to get involved? Check out KidsX Opportunities!

KidsX has some AMAZING opportunities for youth, both living with and without a current medical condition.

These opportunities involve robots, AI, digital therapeutics, virtual reality, gameplay, and much more!

If you are interested in providing feedback to cool digital health companies starting now to February 18, please check out the opportunities linked below to see if you qualify for any of the UX tests!

 

Click here to view the

KidsX Opportunities!

*Must have parental consent to participate in UX tests*

*Session will not be recorded*

 

Beauty Products

Due:  January 29th, 2021

Learn from the Beauty Experts at Beauty Bus!

Beauty Bus is an incredible organization who works with celebrity makeup artists and provides in-depth tutorials for patients (off all ages), hospital staff, and caregivers, has offered to partner with Hope for Henry and iCAN to learn if they have a program that is impactful to patients and if so, how to grow their reach. 

 

Beauty Bus has asked that they host a makeup tutorial for DC iCAN and a limited number of other iCAN members across the country where everyone will get a bag of beauty products, learn from a celebrity makeup artist, and then get to share what they thought to their chapters about tutorial. 

This event will take place

February 11, 7pm-8pm EST

via Zoom

Please email amyohmer@icanresearch.org

if interested!