At every life stage, a blood or bleeding disorder can lead to new questions and concerns. The Steps for Living website from NBDF was designed to be the premier informational site for the bleeding disorders community, providing education across the life span. And now, for the first time since its launch in 2011, Steps for Living is getting a complete makeover.
First, let’s start with what’s not changing — and that’s the steps for living themselves:
First Step, covering birth to 8 years old
- Next Step, covering 9 to 15 years old
- Step Up, covering 16 to 25 years old
- Step Out, covering adults
“Steps for Living starts when you have a newborn and you learn they have a bleeding disorder. How are you navigating life with a baby with a bleeding disorder? What are the things to look out for?” says Lena Volland, the director of education for the National Bleeding Disorders Foundation (NBDF). “Then, we provide information for the start of preschool on through elementary school, middle school, high school, university, vocational school, gap years, choosing a job, and becoming independent.”
The site has long been a valuable tool for health care providers and NBDF’s chapters.
“It’s a wonderful resource for when a new family or individual is referred to our chapter,” says Maureen Grace, MPA, the senior executive director of NBDF’s Nebraska chapter. “We use it as a resource for families if they are being introduced to the bleeding disorders world and they’re trying to figure out all the things that go with it. Since it walks you through the big issues at every stage in life, there’s something for everyone to learn.”
The Nebraska chapter links to Steps for Living in its newsletter, uses the content for educational sessions, and shares links with people as a resource.
Providers commonly use Steps for Living to guide their patients through milestones in life. It educates parents and helps young people become more independent as they age, says Cindy Bailey, PT, DPT, OCS, SCS, ATC, director of physical and occupational therapy for the Orthopaedic Hemophilia Treatment Center at the Luskin Orthopaedic Institute for Children in Los Angeles.
She and a colleague created a checklist for providers based on Steps for Living to walk through key milestones at patients’ annual exams. “We focus on age-appropriate questions, like by age 3, have they been taught to use their knee pads on the playground? At age 7 or 8, are they seeing bruises?” Bailey says. “We want to make sure we’re asking certain questions. What have they been introduced to? How are they making progress toward independence?”
The overhauled Steps for Living site promises to help people, providers, and NBDF chapters better understand and communicate about blood and bleeding disorders. Here are seven reasons to get excited about the new website, launching this summer.
A More User-Friendly Site
One primary objective of the Steps for Living relaunch is to make it easier for people to find what they need on the site.
“The Steps for Living site has been around for a long time, and it has grown throughout those years. More topics and a lot of new content have been added,” Volland says. “As a result, the website became difficult to navigate. This redesign will make the site much more user-friendly so everybody can get all the information they need in as few clicks as possible.”
And while the site has had various writers over the years, a concerted effort has been made to rewrite the content in a consistent voice and tone that’s easy for readers to understand.
Expanded Content
In the fall of 2023, the National Hemophilia Foundation became the National Bleeding Disorders Foundation in a move to be more inclusive of all inheritable blood and bleeding disorders.
“Steps for Living will not be hemophilia-centric. It covers a wide variety of bleeding disorders,” Volland says. “We have information on von Willebrand disease, ultra-rare factor deficiencies, platelet dysfunctions, and more. And we will continue to add to that, because this is a living, always-expanding site.”
Up-to-Date Information
A lot has changed in the world of blood and bleeding disorders over the past decade. With the new Steps for Living site has come a recommitment to up-to-date information.
“There are new treatments that are either on the horizon or that have been approved, such as gene therapy,” Volland says. “We needed additional treatment information as well as additional resources for our community.”
The NBDF team has been working through the more than 600 pages of content to make sure each piece features the latest resources.
“And it’s not just our own resources but also other resources that might be helpful that we are linking to,” Volland says. “It’s also about more than treatment. It’s about the overall quality of life and the information families need to live a healthy life with a bleeding disorder.”
Kid-Friendly Content
The new site will include expanded content specifically for children with blood and bleeding disorders.
“We cover topics that are important for school-age children. And the beautiful part for this particular age group is that it’s not only written for parents but for the kids as well,” Volland says. “At this age, a lot of children are starting to become more independent and are wanting to learn more, so all topics are also written through a kid-friendly lens.”
Visitors can move a toggle switch to indicate whether they want to read an article from a parent’s perspective or a child’s perspective. The language has been updated to make everything understandable and appropriate for each audience.
Spanish Translation for All Materials
Through its market research, NBDF understands that many Steps for Living website visitors read the information in Spanish, so it was important to continue — and expand — its translated content.
“Not only will the articles for each step be translated, but all of the kid-focused content will be available in Spanish as well,” Volland says. “We also made sure that any outside resources we are providing are offered in Spanish so that people can find the information they need in the language that is most suitable to them.”
Additional Information for Adults
Adults of all ages and experiences have different needs, and the new Steps for Living site will help them understand a wide range of health and personal issues.
“We are adding topics on work, financial independence, and aging,” Volland says. “We talk more about menopause, living arrangements, and all the way to end-of-life planning. We really go through the age spectrum.”
As a physical therapist, Bailey is particularly excited about the additional content for adults because there are a lot of considerations. “For example, if you have children, what will that mean for you physically? Do you need a certain kind of stroller?” she points out. “Then, there’s your choice of occupation. Do you want to go to college or trade school? If you have a laborer’s job, how long do you want to keep it? What accommodations do you need to think about to help save your joints as you get older? Those are the types of things we introduce to adults.”
Expanded Resources
The new Steps for Living website will have an updated and expanded resource section with useful tools.
“For example, we have a school toolkit as well as documents to use for individualized education program discussions with your school,” Volland says. “People will also find a babysitter toolkit, financial planning tools, insurance support, checklists for subcutaneous injections and infusions, and more. We’ve really worked to integrate a lot of incredibly useful, fantastic tools to help people live their lives.” The team is also expanding the site’s interactive material.
The new website, which has been in the works for several years, is expected to launch in summer 2024.
“I’m so excited for the community to see the new Steps for Living. It’s not just a quick, minor redesign or alignment with the brand. It’s a reconceptualization of a very exciting program,” Volland says. “I hope it’s evident how much effort was put into this project to ensure that we’re providing a resource that can truly help the members of our community live their healthiest lives.”