What is NYLI?

NBDF's National Youth Leadership Institute (NYLI) provides young people (18-24 years old) in the bleeding disorders community with leadership opportunities to encourage personal growth, effect change, and positively influence others.


What to Expect:

The National Youth Leadership Institute is a two-year program designed to assist young people from the bleeding disorders community in becoming well-trained, recognized leaders. In addition, NYLI provides an amazing opportunity for youth to learn and share experiences of living with a bleeding disorder. NBDF achieves these outcomes by providing young adults with training, support, and opportunities to provide education to the bleeding disorders community.

Since January of 2015, the NYLI program has implemented a three-track curriculum. The program will continue to provide young adults with the same opportunities to become established leaders and speakers in the bleeding disorders community, while also providing them with the tools to implement more direct programs at the local level.

Each year of the program will focus on developing specific skills through a variety of in-person trainings, webinars, and year-round communication. The first year of the program is dedicated to developing individual and professional skills including: public speaking, leadership techniques, networking skills, and résumé building. In addition, NYLI will further develop these skills by selecting one of three areas of focus – or tracks – that will shape the remainder of their time in NYLI:

  1. Education Track: Training and experience in program planning for educational events, meeting and group facilitation with opportunities to practice, learning about NBDF’s Educational Outreach programs, and learning how the education department supports those with bleeding disorders.
  2. Advocacy Track: Training and experience in speaking with elected legislators, facilitating advocacy education workshops, involvement in legislative events for state chapters in a leadership capacity with a special interest in training youth to become more confident advocates.
  3. Research Track: Training and experience in understanding and conducting research that impacts the bleeding disorders community, attend meetings and programs to develop outreach materials for chapters and community engagement, coordinate events with the research department and gain experience communicating scientific information.

In their second and final year of the program, NYLI members will focus on implementing what they've learned through an in-depth Capstone Project. The capstone project will be the implementation of information gained through training, events, and track assignments that the NYLI member experienced. The project will bridge that information into actionable progress towards the bleeding disorders community.

The application is typically available in January each year, and due in late February. Applicants are usually notified of their acceptance by early April. Young adults may remain in the program for two years total, but they are requested to renew their membership annually by completing a renewal form. Click here to learn about joining the 2024 cohort.


What You Get:

  • Training and experience in developing leadership and communication skills
  • Opportunities to experience and network with the bleeding disorders community at a national level by attending national meetings and providing educational workshops in several states
  • Experience in creating and facilitating meaningful programs for the purpose of education, advocacy, fundraising, and awareness

Each year, all NYLI members attend the NBDF Bleeding Disorders Conference, which includes educational training components, volunteering to engage the greater bleeding disorders community, and speaking opportunities. In addition to the trainings below, NYLI may also be invited to attend additional trainings and meetings throughout the year.

Here’s what current NYLI members have to say about their experience in the program:

“My favorite experience during my time in NYLI has been doing the Instagram takeover during Washington Days. I had a great day sharing all the accomplishments of community members from across the country and made a lot of new friends.” – Nitya

“Due to unfortunately timed illness, I missed the very first NYLI event. Heading to Washington Days a few months later, I was a bit apprehensive, knowing nobody and having missed the initial training and bonding. Instead, everyone was kind and welcoming, and by the end of the week I felt like I could call every NYLI member my friend. Every event since then has been a blast, in no small part due to the great people I’ve gotten to know in the program.” – Joe

“NYLI has afforded me many opportunities over the past 2 years. I have had the ability to create programs, collaborate with others and form unbreakable bonds. We are a family, across the nation and in the same room and I wouldn’t change it for the world.” – Dejah

“NYLI is such a unique program that it not only exposes us to the struggles and triumphs of other chapters around the country, but allows us to form deep bonds and friendships with people we would have never met before! From going out to eat with my cohort after New York training days to sightseeing with my newfound friends after a long day of meetings at Washington Days. Although my experience was hindered because of the pandemic, that didn’t stop the discord game nights nor friendly check-ins on Snapchat from my new family to see how medical school applications are going or what did I end up naming my new dog. It’s evident NYLI stands by its statement of helping each member with personal growth and positively influencing others during each meeting and meet up that we would have!” – Delila

“One of my favorite aspects of being an NYLI member is the incredible friendships I have made. These connections formed because all our lives are impacted by a bleeding disorder, but our love and support for one another extends outside of the bleeding disorders community and exists even when we are apart for months. Some of my best memories are because of NYLI and the people I’ve met through it.” – Patti


Responsibilities While in NYLI:

If selected, the following responsibilities will be expected of you.

  • Represent NBDF in a positive manner
  • Help NBDF to understand issues particular to young adults
  • Respond to NBDF communications within 2 business days


Events & Trainings of the Program*

1st Year:

  • Leadership Training
  • Washington Days
  • Choosing of NYLI Tracks
  • NBDF Bleeding Disorders Conference

2nd Year:

  • Washington Days Training
  • NBDF Bleeding Disorders Conference
  • Facilitation Training

Some of the Track Opportunities:

  • Insurance & Reimbursement Conference (Advocacy Track)
  • Program Planning Training & Education Department Events (Education Track)
  • Subject Matter Expert Summits (Research Track)

* NYLI places school and work as a first priority; however, consistent inability to meet these expectations may result in termination from the program.

All expenses (e.g., travel, hotel, meals) for any NYLI event are covered and/or reimbursed by NBDF.


Meet the NYLI

Thank you to our 2024 Supporters


CSL Behring
Hemophilia Alliance