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Decoding Darier's, Chicago, IL (2026)

06/07/2026

💙 Men's Mental Health Awareness Month

Living with a rare disease comes with challenges that aren't always visible. While symptoms may be physical, the emotional impact can be just as significant.

Many men face pressure to stay strong, push through, and keep their struggles to themselves. But no one should have to navigate a rare disease alone.

That's why we've created the Decoding Darier's Instagram Community Chat, a space where people living with Darier's disease, caregivers, and supporters can connect, share experiences, and support one another.

Community can make a difference. 💙

👉 Comment "CHAT" below or visit the link in our bio to join.

05/31/2026

Living with a rare disease can take a toll not only physically, but mentally and emotionally too. 💙

When your nervous system feels overwhelmed, even small moments of care can make a difference. Gentle habits like getting outside, taking deep breaths, stretching, resting, drinking water, or simply slowing down can help your body feel a little safer and calmer.

And here is your reminder:
You do not need to “earn” rest.

Taking breaks, protecting your peace, and listening to your body are all important forms of self-care, especially on hard days.

Healing is not always linear, and caring for yourself does not have to look perfect to matter.

What helps regulate your nervous system? Share below ⬇️

05/30/2026

Summer can look very different when you are living with Darier’s Disease. ☀️

What many people see as a fun, carefree season can also bring painful flares, irritation, exhaustion, and emotional stress for those managing a chronic skin condition.

From avoiding heat and sweat to planning around flare-ups and navigating public spaces while feeling self-conscious about visible symptoms, even simple summer activities can take extra energy.

This is your reminder to lead with kindness and understanding. You never truly know what someone may be managing behind the scenes.

And if you are living with Darier’s Disease this summer, please know you are not alone. This community sees you.

What is one thing you wish people understood about living with Darier’s during the summer? ⬇️

05/29/2026

In this episode of Bob the Scientist, we’re breaking down a question from the Decoding Darier’s community: what is mosaic Darier disease? 🧬

📍 Bob Harmon from Northwestern University with the Darier Disease Research Group explains that while most cases of Darier disease are inherited, there are some cases where the genetic mutation only appears in a portion of the body.

This can happen very early in development, when only a few cells are forming, meaning only some cells carry the SERCA2 mutation that leads to Darier disease.

As the body grows, this can result in a mosaic pattern of affected and unaffected skin. In some cases, this may appear as lesions in a linear pattern, sometimes referred to as linear Darier disease.

This phenomenon is known as genetic mosaicism, and it helps us better understand the many ways Darier disease can present.

We are so grateful to the community for asking thoughtful questions that help drive education and research forward.

05/28/2026

Darier’s Disease may be rare, but the people living with it deserve to be seen, understood, and supported. 💙

Because Darier’s is so uncommon, many patients spend years searching for answers, battling misunderstandings, and feeling alone in their journey.
That is why awareness matters.

Every shared story, conversation, and post helps bring more visibility to the rare disease community and reminds others that they are not alone.

If you live with Darier’s Disease, we would love to hear your story. Sharing your experiences can help others feel seen, supported, and connected within this community.

Send us a message to share your journey 📚️

05/26/2026

Help Us Create a Brighter Future for Darier’s Disease 🧬 🦓

Darier’s Disease is rare — and because it’s rare, research is underfunded, misunderstood, and often overlooked. But together, we can change that.

Decoding Dariers is proud to support the Darier’s Disease Research Fund at Northwestern University, dedicated to advancing understanding, improving treatment options, and bringing hope to those living with this condition.

When you donate, you’re not just giving money —
you’re fueling science, supporting patients, and helping build a future where Darier’s Disease is better understood, better treated, and better supported.
Every contribution, big or small, moves research forward.
Every share raises awareness.
Every act of support matters.

💛 Join us in making a difference today:
(Link in bio to donate)

05/24/2026

“What started as a small Instagram page turned into a global community.” 💙🧬

During her speech at the 2026 Epidermal Differentiation Disorders Symposium, Decoding Darier’s founder Genevieve Lee shared the story behind building a space where Darier’s patients around the world could feel seen, supported, and understood.

What began in February 2024 as a way to connect with a few others navigating the same rare disease has grown into a worldwide community spanning multiple platforms, connecting patients across 10+ countries.

From sharing treatment journeys to walking together in solidarity during our annual awareness walk, this community continues to prove that no one should have to navigate Darier’s Disease alone.

For a disease that can feel invisible, this community has made it visible. 🦓

05/24/2026

“What started as a small Instagram page turned into a global community.” 💙🧬

During her speech at the 2026 Epidermal Differentiation Disorders Symposium, Decoding Darier’s founder Genevieve Lee shared the story behind building a space where Darier’s patients around the world could feel seen, supported, and understood.

What began in February 2024 as a way to connect with a few others navigating the same rare disease has grown into a worldwide community spanning multiple platforms, connecting patients across 10+ countries.

From sharing treatment journeys to walking together in solidarity during our annual awareness walk, this community continues to prove that no one should have to navigate Darier’s Disease alone.

For a disease that can feel invisible, this community has made it visible. 🦓

05/23/2026

“One of the main things for me is collaboration.” 💙

During the dinner portion of the 2026 Epidermal Differentiation Disorders Symposium, Laura Lee, Genevieve’s mom, shared a heartfelt message about hope, gratitude, and the power of bringing researchers, physicians, advocates, and families together.

After 20 years navigating life with a rare skin disease, moments like these are a reminder that progress happens when passionate people come together with one shared goal: finding treatments and cures for EDD diseases.

We are so grateful to be part of this incredible community. 🧬🦓

05/23/2026

“One of the main things for me is collaboration.” 💙

During the dinner portion of the 2026 Epidermal Differentiation Disorders Symposium, Laura Lee, Genevieve’s mom, shared a heartfelt message about hope, gratitude, and the power of bringing researchers, physicians, advocates, and families together.

After 20 years navigating life with a rare skin disease, moments like these are a reminder that progress happens when passionate people come together with one shared goal: finding treatments and cures for EDD diseases.

We are so grateful to be part of this incredible community. 🧬🦓

Decoding Darier's

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