Kirsten Norgaard Consulting

09/02/2025

✈️ Heading from Oregon to Boston today for the Global Genes Rare Drug Development Symposium!

This conference brings together innovators, researchers, and advocates all working toward one goal: creating real solutions for the rare disease community.

I’m honored to be part of it and excited for the conversations, collaborations, and breakthroughs that can help move lifesaving ideas forward.

Stay tuned for updates from Cambridge — it’s going to be a powerful week 💙🧬✨

08/13/2025

Some days, you’ll feel strong and unshakable.
Some days, you’ll feel scattered and worn thin.
Most days, you’ll be a mix of both.

But every single day you keep going — showing up for yourself, for your community, for the work that matters. You’re standing, fighting, healing, growing, and trying.

That’s resilience. That’s advocacy. And it’s beautiful.

If you’re ready for support navigating complex systems, building patient-centered strategies, or turning lived experience into lasting change, I can help. Let’s work together.

07/24/2025

I’ve only just begun talking about the work I’ve been doing this past year.

Behind the scenes, I’ve been helping families around the world navigate pediatric cancer and rare disease diagnoses—fighting for clinical trial access, emergency treatment, and cross-border care.

These are life-or-death cases. They take everything I’ve got.
And the families? They don’t pay me. I do it because someone has to.

If you want to support this work—or if you believe advocacy like this deserves backing—
buy me a coffee: coff.ee/kirstennorgaardconsulting
(LINK IN BIO)

Your support helps me keep saying yes when no one else can.
—Kirsten

07/23/2025

🧬✨ When the system says “no,” we find another way. ✨🧬

For the last 7 months, I’ve been working nonstop to help my godson Devyn access a life-changing clinical trial for retinoblastoma using Chemoplaque—a localized chemotherapy treatment designed to save not just lives, but sight.

This is what real-world advocacy looks like:
📍 Navigating state-by-state approvals
🗂 Fighting through Medicaid delays and denials
🌍 Coordinating across borders
🫱 Standing beside families when they’re told there’s nowhere left to turn

The Chemoplaque trial at NewYork-Presbyterian is open now, and I’m here to help more families get access. If your child has intraocular retinoblastoma and you’re looking for support—I’ve got you.

💌 kirsten@united4rare.com

07/19/2025

This is my son, Tristan. Smiling like a superhero… just hours after nearly losing his life to an adrenal crisis.

We made it to the ER in time this time. But what about next time? What about the kids whose symptoms aren’t recognized fast enough? What about the families who don’t have a cortisol monitor in their corner?

That’s why I’m building CortiCheck — a real-time cortisol test for patients like Tristan, so parents, caregivers, and even ER doctors can stop guessing.

This is for every family who’s ever had to fight for answers.
🩸 We’re fighting for them — and we’re not stopping.
Please donate and share to help us build it! https://gofund.me/1349d56f


www.CortiCheck.com

07/06/2025

You don’t have to wait until you’re “better” to take control of your complex care.
Hard truth: the medical system rarely waits for you to feel ready. So we don’t either.

In my consulting, I help people living with rare diseases, chronic illness, and complex medical needs move forward anyway — overwhelmed, anxious, grieving, uncertain — all of it is welcome here.

Because sometimes the doing — the advocacy, the second opinion, the new plan — is what starts the real healing.

✨ If you’re ready to get unstuck, I’m here to help you lead the way.

07/06/2025

When your child is born with a diagnosis no one understands…
When you’re told “there’s nothing we can do” — but you know you have to do something…
When the denials pile up, the calls go unanswered, and you’re so tired of fighting alone…

This is where I come in.

For nearly two decades, I’ve stood beside families when the system says no — and helped turn that no into approvals, access, and real hope. From fighting for life-changing treatments to pushing past endless paperwork and red tape, I’m here to open doors that feel locked.

Alongside my deep experience as an advocate and strategist, I also bring holistic support as a certified health coach trained through Harvard — because real change takes more than paperwork. It takes strength, clarity, and care for the whole family too.

I work one-on-one with a small number of families and groups — helping you break through barriers with clear strategy, strong advocacy, and support you don’t have to carry alone.

🗂️ This is professional, hands-on work designed for real results.

If you’re carrying an impossible case and need help lifting it, send me a message. We’ll see if I’m the right fit to stand beside you. 🕊️✨

07/02/2025

🩺 Patient Advocate & Complex Case Consultant
📌 Helping patients and families navigate rare, complex, and misunderstood medical conditions — when the system says no, I help you find yes.
📜 Deep experience overturning insurance denials, securing second opinions, coordinating with top specialists, and guiding families through clinical trials.
💡 I take on the research, calls, paperwork, and strategy — so you can focus on healing, not fighting.
🌿 Certified Health Coach (Harvard) | 17+ years of real-world rare disease advocacy | Personal experience turning “impossible” into outcomes.

DM to work together — let’s build your plan, your team, your peace of mind.

06/27/2025

🚨 These cuts will hurt so many people! Please call or email your reps 🚨

Your advocacy can stop devastating budget cuts that hurt 1+ million Oregonians with disabilities!

06/24/2025

🚨 Big News from the Rare Disease Frontlines 🚨

After 17 years of advocacy, legislation, and lived experience as a rare disease parent, I’m proud to publicly launch my latest project: CortiCheck™ — the first handheld real-time cortisol monitor for adrenal insufficiency and beyond.

This device could mean faster treatment decisions, fewer hospitalizations, and more lives saved — starting with my son’s.

🔬 Built in partnership with brilliant researchers.
🩸 Powered by just a single drop of blood.
💡 Designed by patients, for patients.

This is personal. And it’s time.

Join me in bringing CortiCheck to life.
📲 www.corticheck.com

04/26/2025

03/11/2025

If you are reading this then I want you to stop and think for a sec. Think of the darkest space you’ve been in. Don’t dwell there, just look back long enough to grasp just how far you’ve come. You have moved mountains, jumped hoops, made significant changes and look at you now! If you’re still weak look no through the muck and more keep walking, keep fighting, keep growing. You’ve got this 🌟