Decoding Darier's

Decoding Darier's Welcome to Decoding Dariers! A group focused on supporting and fostering a community for those diagnosed with the rare skin disease, Dariers.

Join us to raise awareness!

Your story matters! 🦓 💭 Sharing your journey with Darier's disease can inspire hope, connection, and strength in others ...
04/12/2026

Your story matters! 🦓 💭

Sharing your journey with Darier's disease can inspire hope, connection, and strength in others navigating life with a rare condition.

Click here to submit your story and help us raise awareness! https://forms.gle/mfMb1QdyjWiYbiZZA

MYTH BUSTED! ❌ Many people think everyone with Darier’s disease experiences the same symptoms.FACT ✅: Symptoms can vary ...
04/10/2026

MYTH BUSTED! ❌ Many people think everyone with Darier’s disease experiences the same symptoms.

FACT âś…: Symptoms can vary widely from person to person. This is called variable expressivity, meaning severity, appearance, and triggers are unique to each individual.

Understanding this helps raise awareness and compassion for those living with Darier’s disease.

Living with Darier’s Disease, or caring for someone who is, can feel isolating. But it doesn’t have to be. 💙Our Instagra...
04/05/2026

Living with Darier’s Disease, or caring for someone who is, can feel isolating. But it doesn’t have to be. 💙

Our Instagram Community Group Chat was created for patients, parents, and caregivers to connect, share, and support each other in real time.

🧬 Real support
🧬 Shared experiences
🧬 A community that truly understands

Join us today, you’re not alone. Click here to join! https://www.instagram.com/j/AbYzpWZQux6J6GWJ/

Darier Disease and Hailey-Hailey Disease are often called “sister conditions” and for good reason.While they may look di...
04/04/2026

Darier Disease and Hailey-Hailey Disease are often called “sister conditions” and for good reason.

While they may look different on the surface, they share a deep connection at the cellular level. Understanding that connection is helping drive research forward for both. 🧬

Follow us for weekly content!

04/03/2026

🔬 Erin the Researcher is back! 💡

This week, Erin shares the top 3 things she’s learned since diving into Darier Disease research, from surprising insights about calcium and metabolism to mastering advanced cell biology techniques. 🧪

Watch now and see how science is helping decode Darier’s, one discovery at a time.

April is Stress Awareness Month, and for those living with a rare disease, stress isn’t just occasional… it can be part ...
04/02/2026

April is Stress Awareness Month, and for those living with a rare disease, stress isn’t just occasional… it can be part of everyday life. 💙

From navigating symptoms and flare-ups to managing appointments, uncertainty, and feeling misunderstood, there’s a unique emotional weight that often goes unseen.

If you or someone you love is affected by a rare disease, your experience is valid. Taking care of your mental health is just as important as caring for your physical health. 🧠

This month, we’re reminding our community:
💙 You’re not alone
đź’™ Your stress is real
đź’™ Support matters

Let’s continue to create spaces where people feel seen, heard, and supported.

🎤 Exciting News!We’re thrilled to announce that Genevieve Lee, founder of Decoding Darier’s, will be speaking at the Epi...
03/29/2026

🎤 Exciting News!

We’re thrilled to announce that Genevieve Lee, founder of Decoding Darier’s, will be speaking at the Epidermal Differentiation Disorders Symposium on May 12, 2026 in Chicago, IL!

This symposium brings together researchers, clinicians, and patient advocates to advance understanding and treatment of rare skin disorders like Darier disease. Genevieve will share insights from the patient perspective and highlight the importance of advocacy in rare disease communities.

Learn more & register: https://www.pachyonychia.org/2026-edd-symposium/?utm_source=ig&utm_medium=social&utm_content=link_in_bio&fbclid=PAZXh0bgNhZW0CMTEAc3J0YwZhcHBfaWQMMjU2MjgxMDQwNTU4AAGnWwt9bL6gBC07f--EUSmBUF19V6uJbJaHkiX23oDwwLFDvruXJXnSnlynvVA_aem_1kfFDi1RdigmWRSEJUMU6g

💛 Caregivers Are HeroesCaring for someone with a rare disease like Darier’s comes with unique challenges—and you don’t h...
03/28/2026

đź’› Caregivers Are Heroes

Caring for someone with a rare disease like Darier’s comes with unique challenges—and you don’t have to do it alone.

NORD’s caregiver resources offer guidance, support, and practical tips for navigating daily life, medical care, and emotional well-being. Whether you’re a parent, partner, or friend, these tools are here to help.

đź”— Explore the resources: https://rarediseases.org/living-with-a-rare-disease/caregiver-resources/

Parenting a child with a rare disease comes with unique challenges and requires a strong advocacy voice. Learn how to na...
03/27/2026

Parenting a child with a rare disease comes with unique challenges and requires a strong advocacy voice. Learn how to navigate the healthcare system effectively and champion your child's needs! Together, we can make a difference!

Tag a parent who will find this helpful!

03/26/2026

Bob the Scientist: The Power of One Mutation

"How can one tiny change in DNA cause so many problems?" 🧬 Dr. Bob Harmon from Northwestern University breaks it down, explaining how a single mutation in the SERCA2 calcium pump can disrupt protein function and lead to the visible skin symptoms of Darier’s Disease.

It’s a small mutation with big impact.

🎥 Watch to learn how rare diseases often start at the molecular level.

03/22/2026

Living with Darier’s Disease can be unpredictable. Some days are harder than others, and that’s okay.

Today, give yourself permission to pause, breathe, and remind yourself:
- “I am more than my flare-up.”
- “This moment does not define me.”
- I deserve kindness, especially from myself.”

You’re strong, resilient, and doing your best, even on tough days! 🦓 🧬

Save this post for a little daily boost whenever you need it.

03/22/2026

Living with Darier's Disease can be unpredictable. Some days are harder than others, and that's okay.

Today, give yourself permission to pause, breathe, and remind yourself:
- "I am more than my flare-up."
- "This moment does not define me."
- I deserve kindness, especially from myself."

You're strong, resilient, and doing your best, even on tough days! 🦓 🧬

Save this post for a little daily boost whenever you need it.

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