New Database of Independent Living Resources for the FOP Community

The IFOPA is pleased to launch a brand new resource for the FOP community – the Ability Toolbox Online Guidebook – a database of adaptive tools, equipment, home modifications and tips for the FOP community to access as a resource for independent living. Individuals with FOP and their family members and caregivers will be able to use this resource to discover and share useful tools and share tips and experiences that help make living with FOP more manageable.

The Online Guidebook has been designed to be user friendly:

• Accessible both on a desktop and mobile phone
• Translated into any language with the click of a button
• Searchable by keyword, activity or mobility restriction (must search keywords in English, then can translate the text to read about the resource)
• “Favorites” feature for later reference (available to individuals who have logged in)
• Shareable on social media

Both commercially purchased tools and homemade tools that members of the FOP community have crafted will be featured with descriptions, pictures, tips for use, videos (if available) and links to vendor sites for purchasing.

The Online Guidebook is organized by activity and has search capabilities by keyword or mobility restriction. While the Online Guidebook searches by activity or mobility can be translated into any language, keyword searches must first be completed in English. Online Guidebook users will be able to leave reviews and comments. The Guidebook includes a login feature giving users the ability to save “Favorite” items to go back and view later.

The Ability Toolbox Online Guidebook is an incredible resource for new families just beginning to learn about tools or someone looking for ways to adjust as mobility changes. The Guidebook saves users both time and effort by putting tools useful for FOP adaptations in one place. It also helps save money as individuals and families share what works best for them, how they made a homemade version of a tool or how to use an existing tool in a different way. 

The Online Guidebook is launching with a few tools in each category, but the hope is that more tools will be continuously added as time goes on and as more people participate by offering remarks, pictures, videos and new tool ideas.

To access the Online Guidebook, visit guidebook.ifopa.org/. You don't have to log in to view the database of resources. This allows you, your family, health care professionals, social workers, teachers, etc to view and use the Online Guidebook. To to use the "Favorites" functionality to save tools to view later, you will need to log in to the Online Guidebook. 

• If you have already set up a profile in the Patient Directory, click the login link. 
• If you would like to set up a profile so you can access the Patient Directory and the Guidebook with the same login, click here to set up an account. You will receive an email with your username and login within 24 hours Monday-Friday. 
• If you are only interested in a login for the Ability Toolbox Online Guidebook, click My Account to set up an account. 

Would you like to submit a picture and/or video demonstration of a tool(s) you use for inclusion in the Ability Toolbox Online Guidebook? Email them to Melissa Davis, IFOPA Family Services Coordinator, at [email protected].

MANY THANKS TO OUR SPONSORS 

The IFOPA is able to offer Ability Toolbox: Everyday Tools for Independent Living thanks to generous support from the Radiant Hope Foundation, as well as Regeneron Pharmaceuticals, Ipsen and Blueprint Medicines.