Projects & Opportunities

We have an exciting new survey from our friends at Labcorp for our youth members to take on the very important subject of making sure that Clinical Trials are inclusive for pediatric patients! 

 

This survey is aimed for youth members 12 to 17! The answers on this survey will help pharmaceutical companies ensure that clinical trials are supportive and accessible to the pediatric population. 

The Mi4 Summer Internship Program at CHOC gives students the unique opportunity to explore the future of healthcare — invaluable experience for anyone interested in or exploring the health care field. The interns learn to problem solve and create solutions unique to hospitals. Through the opportunities provided within the internship, students are immersed in several emerging areas that are relevant to the future practice of pediatric medicine:

• genomic medicine and personalized medicine

• regenerative medicine and stem cells

• nanomedicine

• robotics and robotic surgery

• artificial intelligence and big data

• medical devices and mobile technology

• innovations in healthcare delivery

It is estimated that more than 30 million Americans are living with one or more rare diseases, the majority of which are diagnosed in childhood. While scientific innovation offers much promise, still more than 93% of the 7,000 known rare diseases have no FDA-approved therapy. Yet, improvements in diagnostics, clinical care, and therapeutic interventions are transforming pediatric rare diseases into ‘pediatric-onset’ rare diseases and young adults are thriving decades into adulthood. However significant gaps remain as resources to support the transition to adulthood is often overlooked, leaving individuals feeling alone or isolated. The community relies on the resources available to them to help navigate benefit eligibility, the healthcare system, securing and managing caregivers, mental and emotional support, advocacy opportunities, and the general day-to-day challenges that may arise.

Although many resources exist, opportunities for cross-collaboration do not. The Young Adult Representatives of RDLA (YARR) would like to convene partners focused on serving young adults within the rare space. The Young Adult (YA) Coalition will serve as a platform for organization awareness, collaboration and problem solving so that we can all better support young adults with rare diseases.

KIDS CAN is doing a research project on Youth Advisor Training. We had the pleasure of attending the 2022 iCAN Summit and were able to talk to many of you, as chapter leaders, about our project. If we didn’t get a chance to talk to you at the conference and explain our research project, then please make sure to read the document carefully to fully understand what our project is looking into. We would appreciate it if chapter leaders who were both present and not present at the conference, answered our research questions so can get a well-rounded understanding of how youth are trained all over the world.

• Responses in by September 10th if possible.

• Please answer the questions in a copy of the document or an email back to Kate Stevens (stevens.kate@hotmail.com). 

• If you have any questions about the research project, please contact Kate Stevens (stevens.kate@hotmail.com) or Georgia Simkin (simkingeorgia@icloud.com).

• Click HERE to download the document.

 

 

If you do not wish to share your email or contact information, you may also respond to this email with your survey question answers and I will send the responses to the KIDS CAN team. 

Our partners at Pfizer have invited everyone at iCAN to share their thoughts and to provide feedback on an important patient-focused questionnaire. 

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To get started, click the link below.  

Calling iCAN Youth Members:

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An awesome speaking opportunity for a symposium is available for one amazing youth member.

You must have:

• Participated in a clinical research trial

• A diagnosed condition in one of the following therapeutic areas:

  • Childhood Cancer

  • Diabetes

  • Autoimmune Conditions

  • Gastro Intestinal Conditions

 

The symposium will take place the beginning of November, 2022 in person, with more details to come. 

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If you are interested, email info@icanresearch.org

with the subject "Interest in Symposium Speaking Opportunity".

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.

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

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 

Calling iCAN Youth Members -

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Are you interested in presenting your research?

 

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

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Click HERE to learn more about registration and submissions!

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Click HERE to download the flyer.

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.

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.  

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!

Calling iCAN Youth Members -

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

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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.

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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"

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Any questions?  email info@icanresearch.org

Calling All iCAN Youth Members -

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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.  

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

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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!  

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Any questions?  email info@icanresearch.org

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.  

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

Rare Artist 2021!

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