Take control of your health care with the Own Your Path program! If you are a male assigned at birth between the ages of 18-29 years old and on a prophy regimen for hemophilia treatment, 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.
Tune in to the BloodStream podcast and discover how Own Your Path is empowering young adult males to take control of their bleeding disorder and live life to the fullest! Here is the podcast link: https://www.bloodstreammedia.com/bloodstream-episodes/own-your-path
Want to Know More About the Role of a Health Coach in Own Your Path?
Take a look at the video below from Kirstie who is one of the health coaches in the program.
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.
This training is supported by Cooperative Agreement Number (NU01DD000006), funded by the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.
Own Your Path Basics:
- You can participate in this program if you:
- Were assigned male at birth and
- Live in the United States and
- Are between the ages of 18 to 29 and
- Have Hemophilia A or Hemophilia B and
- Are on prophylaxis treatment (also called “prophy”)
- Currently, we are only able to offer this program to people who speak English.
- 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 at the 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.
The program is designed to help participants with managing and staying on top of their hemophilia treatment, as prescribed by their doctor, and their overall health and wellness.
- You will learn new skills to better manage your hemophilia 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.
- 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.
- 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 email@example.com
Please contact NBDF by email at firstname.lastname@example.org.
You can make changes to your program goals at any time by contacting the health coach.
The program is free.
The program lasts 6 months, but you can access the website and information on the platform for one year.
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.
On average, the program will take less than one hour a week.
The program is virtual.
- You connect virtually to the app.
- The monthly meetups will occur through a virtual platform (i.e. Zoom).
- 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.
- 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 gene therapy for hemophilia, 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.
You will have the opportunity to receive incentives through gift cards - up to $100 can be earned from completing specific surveys plus additional incentives for monthly meetups (monthly meetup incentives are raffled off).
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.
- 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:
- Yes, you will have at minimum two 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.
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.
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:
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.
- 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.
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.
No, there are no bonus referrals.