Description

Take control of your health care with the Own Your Path program! If you are an adult (18+) and on a prophylaxis treatment plan for VWD or hemophilia A or B, we would love to have you join!

 

What’s in it for you?

This app-based program will provide you with information to navigate life with a bleeding disorder. Being able to stay on top of your treatment is easier if you are able to manage your stress, get enough sleep, move your body, and stay on top of your nutrition. It is also helpful to ensure you have access to information to help you build your knowledge and skills about bleeding disorders; from insurance, to relationships, to traveling with a bleeding disorder we’ve got you covered!

You will have access to a health coach who will help you throughout the program to set and achieve goals, access resources and tools, and get the most out of the program. You will have the opportunity to attend monthly virtual meetups where we will dive into topics that are important to you, and where you will meet others in the program. We have participation incentives throughout the program to reward you for being active in the program.

Eligibility Survey

Please click the link below for a short eligibility survey. Once we determine that you are eligible for the program, you will receive a link from our app partner, NexJ Health to download the app and create your account. Please note that it may take 2-3 days to receive the email to sign up for the program.

Take the Survey

 

Own Your Path Basics:

Who can participate in this program?
  • You can participate in this program if you:
    • Live in the United States
    • Aged 18 +
    • Have Von Willebrand Disease or hemophilia A or B
    • Women, and people, who have or had the potential to menstruate (WPPM) and men.
    • Are on prophylaxis treatment
  • Currently, we are only able to offer this program to people who speak English.
What does the program include?
  • The program includes:
    • Access to health coaching to help you set and achieve goals related to your treatment and overall health.
    • Workbooks to help you manage your bleeding disorder, that cover topics like understanding your diagnosis, scheduling appointments with your health care provider or Hemophilia Treatment Center (HTC), dealing with health insurance, sexual health, and more.
    • A library of health resources with tips on staying active, practicing mindfulness, reducing stress, getting better sleep, and eating healthily.
What will I gain from joining?

The program is designed to help participants with managing and staying on top of their bleeding disorders treatment, as prescribed by their doctor, and their overall health and wellness..

  • You will learn new skills to better manage your bleeding disorders treatment, which we hope will help you to prevent bleeding episodes.
  • You will have a health coach to help you learn how to set and accomplish health goals related to your bleeding disorder treatment, and overall well-being.
  • You will have the opportunity to set and accomplish health goals related to your bleeding disorder, treatment, and overall well-being. You'll have access to other resources such as time management, tips on improving sleep, ways to manage stress, increase physical activity, and healthy eating.
What do I need to do to participate?

To join:

  • Fill out the eligibility survey on the Own Your Path website. If you qualify, you'll get an email from NexJ Health (the health app developer) with a link to log in to the app with your username and password.
  • Log into the app and complete the initial survey. This will help us target the workbooks we recommend specifically to you.
  • Congratulations, you are now enrolled! Your health coach will contact you to set up a meeting.
What should I do if I have a question about the workbooks?
  • If you have any questions about how to complete a workbook or do something in the NexJ Health app, please contact the NexJ program concierge (someone who will help you with the answers you may need) through the platform.
    • Go to the "Conversations" section
    • click on "Program Concierge," and type in your message or question.
    •  When you're finished, click "done" to send your message. They will be there to assist you and provide the answers you need.
  • If you have a question about the information in the workbook. Please contact NBDF at ownyourpath@hemophilia.org
If I have a question for NBDF (National Bleeding Disorders Foundation), who should I contact and how?

Please contact NBDF by email at ownyourpath@hemophilia.org.

Can I make changes to my program goals?

You can make changes to your program goals at any time by contacting the health coach.

How much does the app and program cost?

The program is free.

How long does the program last?

The program lasts 6 months, but you can access the website and information on the platform for one year.

Can I finish early?

No, you cannot finish early. The workbooks are released in stages, and the program is designed to last for the entire six months allowing you to build healthy habits over the time period.

How much time is this program going to take?

On average, the program will take less than one hour a week.

Is this program virtual or in person?

The program is virtual.

  • You connect virtually to the app.
  • The monthly meetups will occur through a virtual platform (i.e. Zoom).
Is the program live or can I access it on my own time?
  • You can access the program on the NexJ app whenever you want and at your own pace.
  • The monthly meetups are live and happen once a month at a specific date and time. This means that you join the meetups at that scheduled time to participate in real-time discussions with others. But don't worry, if you can't make it to a meetup, you can still access the program's resources and materials at your convenience.
What are the monthly meetups?
  • The monthly meetups are virtual gatherings where you can join other participants, the health coach, and NBDF staff to talk and learn about different topics that interest you.
  • During these meetups, you can discuss and explore subjects such as how to set achievable goals, ways to manage your treatment effectively, and other important topics like new treatment products, insurance, and mental health to name a few.
  • It's a great opportunity to connect with others, share experiences, and gain valuable knowledge.
  • You will be entered into a raffle to earn a gift card for participating.
Are there any incentives provided?

You will have the opportunity to receive incentives through gift cards - up to $125 can be earned from completing specific surveys plus additional incentives for monthly meetups (monthly meetup incentives are raffled off).

What is a health coach and what will they do?

A health coach is someone who offers support and encouragement to help participants set and achieve their goals. They are like a positive influence that helps you stay motivated and overcome any challenges that might be getting in the way of reaching your goals. They provide guidance and strategies to help you succeed on your health journey.

Who funds the health coaches?
  • The health coaches are paid by NexJ.
  • NBDF pays for this program through funding received by a special agreement (called a cooperative agreement) between the Centers for Disease Control (CDC) and the National Bleeding Disorders Foundation (NBDF).

Privacy and Security:

Do I have to talk with anyone?
  • Yes, you will have up to four conversations with your health coach.
  • It is a good idea to join the monthly meetups for extra support and learn more but it is not required.
  • You do not need to talk to anyone to complete your workbooks or review materials in the NexJ library.
Will this information be shared with my health care provider or HTC?

No information will be shared with your health care provider or HTC staff. You have the choice to share your health information with your health care provider, but the program won't share it with them.

How secure is my information in NexJ? Can they share it with anyone?

NexJ will send NBDF staff, who work on Own Your Path, the results of individuals’ surveys and workbook quizzes and progress on workbooks. NBDF staff will only have access to individual participant's names if the participant is inactive or has completed the program but not completed the final survey. NexJ health coaches will share general information about barriers/challenges that all participants are experiencing but will not share individual participant information.

End of Program:

What happens after the program ends?

After the program ends, you can still use the app for 6 more months, making it a total of 12 months. We encourage you to keep working on your health goals.

What happens if I cannot finish the program?
  • There are no penalties if you cannot finish the program. While we recommend you finish the program so that you can achieve all the benefits Own Your Path has to offer. You will continue to have access to all the resources like the workbook and the health library for 12 months.
  • You will likely not receive all potential incentives if you leave the program early.
If I get busy, can I come back into the program?

You can log in any time during the 6 months you are enrolled in the program, but we recommend working on it every week/month.

Do I get a bonus if I refer others to the program?

No, there are no bonus referrals.

This program is supported by the Centers for Disease Control and Prevention of the U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $500,000 with 100 percent funded by CDC/HHS. The contents are solely those of the author(s) and do not necessarily represent the official views, nor an endorsement, by CDC/HHS or the U.S. Government.