For rare disease families, February is a month of both love and awareness
We can spread rare disease awareness and celebrate in a traditional sense
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February has two different meanings for our family. On one hand, it’s the month of roses, chocolates, cards, and heart-shaped everything. On the other, it’s Rare Disease Awareness Month, culminating in Rare Disease Day on Feb. 28. It’s a time when families like ours, who are living with Prader-Willi syndrome, share stories and raise awareness for those facing conditions most people have never heard of.
Looking at both meanings together, February becomes something more profound: a month when love isn’t just romantic, but also fierce, determined, and bold.
When most people think of February, they picture Valentine’s Day cards tucked into backpacks, dinner reservations, heart-shaped desserts, and social feeds filled with photos of couples, flowers, and date nights. This version focuses on romantic love and celebration. It’s outwardly bright and commercial, with stores decorated in red and pink, ads promoting jewelry and sweets, and a message that says “show love with grand gestures.”
For many, this is a fun, lighthearted season. It’s about connection, appreciation, and taking a moment to say, “You matter to me.” That, of course, is beautiful and important.
The other February, meanwhile, is quieter at first glance but just as powerful. Rare Disease Awareness Month invites the world to notice families who often feel unseen. For our family and many others, February is less about roses and more about sharing stories that are often overlooked, educating others about complex medical and emotional realities, and advocating for research, policy change, and better care.
Instead of red and pink hearts, you see zebra stripes (the zebra is a symbol of rare diseases), awareness ribbons, and buildings lit in special colors. In February, love might mean signing a petition, traveling to Washington, D.C., for Rare Disease Week, attending a webinar, or standing up in a school meeting to explain why accommodations matter.
Commonalities and differences
Despite their differences, both versions of February are rooted in the same thing: love. Both invite us to pause and reflect on our relationships. While romantic February asks, “Who do you love?” Rare Disease February asks, “Who do you stand beside when things are hard?”
Both encourage us to express ourselves. One encourages love notes and gifts, while the other involves social media posts, emails to legislators, or honest conversations that may make you feel vulnerable.
Both can bring people together. A cozy date night and a support group meeting may look different, but they both leave you feeling less alone.
For caregivers, especially in rare disease communities, these two versions of February often blend together. Love isn’t just a feeling; it’s a daily action. In Prader-Willi syndrome, things like counting carbs, managing therapies, fighting for services, planning for the future, and managing symptoms are also acts of love.
The differences, though, are important. In terms of tone, the month of love is often light, fun, and market-driven. Rare Disease February is serious, purpose-driven, and often born from pain. But it’s also filled with hope.
In terms of visibility, Valentine’s Day is impossible to miss. But Rare Disease Month can pass by unnoticed unless you’re intentionally looking for it. Part of our mission is to change that reality.
In terms of focus, romantic February centers on couples and traditional notions of love. Rare Disease February centers families, caregivers, those with rare conditions, researchers, clinicians, and advocates. Here, love means resilience, advocacy, and community.
The month of love often ends with shared memories, photos, and maybe a few extra pounds from chocolate. Rare Disease Month can end with new connections, policy momentum, fundraising for research, and a stronger sense of identity for rare families.
When love becomes advocacy
For caregivers of children with rare diseases, February is a reminder that love doesn’t always mean candlelit dinners. Sometimes, it’s writing to a school team to refine an individualized education program; telling your story publicly, even when your voice shakes; or joining a virtual event when you’re exhausted. You do it because you know your presence matters.
Rare Disease February doesn’t compete with the month of love; rather, it expands it. It reminds us that love is bigger than romantic gestures. It includes parents, siblings, friends, clinicians, and entire communities standing together to support those living with rare conditions.
So, yes, February can still mean roses and heart emojis. But when we also honor it as Rare Disease Awareness Month, we let love wear zebra stripes, speak truth to power, and brighten the world for families who are anything but ordinary. This February, I hope you’ll find joy in the journey and love in the air!
Note: Prader-Willi Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Prader-Willi Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Prader-Willi syndrome.
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