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Founder/Executive Director of Couch Pennies Foundation for RARE disease, RARE Disease Patient, Writer, Patient-Advocate
Supporting Someone with a Rare Disease: What It Truly Means Supporting someone with a rare disease goes beyond words—it’s about being present in meaningful ways. Emotional Support – Listening, showing empathy, and validating their experiences. Advocacy – Raising awareness, sharing resources, and helping them navigate healthcare challenges. Practical Help – Assisting with daily tasks, transportation, or coordinating care. But only when we ask! Sometimes it’s hard for us to ask for help, so it’s important to use emotional awareness Financial Support – If possible, contributing to fundraisers, nonprofits like @couchpenniesfoundation or helping find resources. Rare diseases often come with unique struggles, but no one should face them alone. Small acts of support can make a huge difference. #RareDiseaseAwareness #SupportMatters #Advocacy #rarediseasemonth #rarediseaseday #february28