Journaling Your Journey

Whether you have a rare disease or care for someone who does, you’ll experience moments and events, both big and small, that you’ll want to take note of, record, and remember. Keeping a journal and documenting what happens—from emotional highs and lows to delays in getting coverage of medication to unexpected breakthroughs—can help.

That’s why Know Rare Connect launched a discussion all about journaling when having a rare disease. Know Rare also offers the opportunity to try a new journaling tool designed for people living with a rare disease. This discussion provides an opportunity to hear from people like yourself, as well as tips and guidance on how to try a simple new way to keep track of everyday occurrences and how you feel about them. These journals can make valuable tools that you can reflect on and share with specialists—even the smallest details may prove to be incredibly valuable.

In this discussion, you’ll hear from:

Laura Will, Rare Mom: Dive deep into Laura's inspiring story as she shares the reasons behind the creation of the journaling app on KnowRare.com. Understand her personal journey of caring for a child with a rare disease and how the app has become an invaluable tool for her.

Johnathan LeGrande, FSGS Warrior: Witness Johnathan’s resilience and strength of as he discusses his battles with FSGS, and how journaling has been a key aspect of his healing and coping process.

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Diagnosed with a rare disease? You can connect to Know Rare at any time by emailing support@knowrare.com.