Rare Genes Movement

19/12/2025

Remember when Beanie Babies felt like treasure hunts and every tag mattered… 🧸✨
Back then, rare meant valuable. Worth searching for. Worth holding onto.

For many families, that idea of “rare” grew up with us. Not as a collection… but as a search. Searching for answers. Searching for names. Searching for a diagnosis that didn’t exist yet.

For years, rare conditions went undiscovered, undiagnosed, or misunderstood. New research and discoveries are finally opening doors… but the journey is still confusing, emotional, and isolating.

That’s where Rare Genes Movement comes in. We support families navigating the path to a diagnosis and help guide them through what comes next once they finally have one.

If this resonates… share it. Start the conversation. Help make rare visible. 💛🧬

17/12/2025

Over 10,000 rare diseases touch millions of lives. Rare Genes Movement raises awareness, connects families to resources, and provides guidance for those navigating the unknown.

Discover how you can make an impact: https://raregenesmovement.org/

The global impact of rare diseases is huge, but silent. Our mission is to be their voice and fund the research to find viable treatment options, beginning with WSS.

09/12/2025

Every rare disease is a unique story. 💛 Over 400 million people worldwide are affected, and every family deserves support and guidance. Rare Genes Movement provides resources, community, and a free guidebook to help families navigate a rare diagnosis.

Take a first brave step forward. Learn more and get involved below!

The global impact of rare diseases is huge, but silent. Our mission is to be their voice and fund the research to find viable treatment options, beginning with WSS.

03/12/2025

Giving Tuesday may be over, but the opportunity to make a difference doesn’t end. 💛

Every donation to Rare Genes Movement helps families navigating rare genetic disorders feel seen, supported, and empowered. Your gift fuels micro-grants, caregiver support, and vital resources that make real impact.

Keep the spirit of giving alive and help us turn awareness into action today.

Your donation helps Rare Genes Movement fund micro-grants, inclusive projects, and vital resources for families facing rare genetic disorders. Every contribution turns awareness into action—bringing hope, connection, and tangible support where it’s needed most.

02/12/2025

Every family deserves someone in their corner 💛

For rare families, the journey can be overwhelming… isolating… and expensive. But today, you can help make life a little easier.

💚 $20… Hope Starter
💙 $50… Family Lift
💜 $150… Caregiver Strength
🧡 $250… Rare Kid Support
❤️ $500… Micro-Grant Gift

Each tier fuels real support like adaptive equipment… therapy access… respite for caregivers… and urgent grants that help families breathe again.

Join us this GivingTuesday and choose a Giving Tier that feels right for you. Every gift matters. Every lift counts.

Donate here: 👉 RareGenesMovement.org/donate 👈

02/12/2025

Small gifts build big hope for rare families navigating the impossible. When you support Rare Genes Movement today, you help children and caregivers get the answers and care they deserve.
raregenesmovement.org/donate

❤️🎗️

02/12/2025

🧬 Hope looks good in every style… but which one is YOURS? Swipe to choose your GivingTuesday heart 💚💛💙

A: DNA Shine ✨
B: Pixel Chalk ✳️
C: Molecule Grid 🧬
D: Gradient Glow 💛
E: Textured Vibes 🎨
F: Minimalist Twist 🤍

👆 Drop your letter in the comments…
💫 Then share the slide you pick to your Story and tag us! Because sharing hope spreads hope.

Your tap helps us reach more people… your gift helps rare families today.

💛 Donate: raregenesmovement.org/donate

02/12/2025

It doesn’t take much to lift a family facing the impossible. 💛
Small gestures become breakthroughs.
Thank you for helping build a future where rare isn’t lonely. 🌈

02/12/2025

✨✨✨

Every rare journey deserves support… and today, you can help make that happen. 💙

Rylee is one of the incredible kids we’re proudly awarding micro-grants to — so her family can access the tools, therapies, and moments of relief they need to keep going.

When a child is navigating a rare genetic condition, even a small lift can mean the world.

Join us this GivingTuesday as we continue to give rare families strength, hope, and a little more room to breathe. 🌈

27/11/2025

Throwing it back to Pointsgiving earlier this month… a day that reminded us why New Jersey does community unlike anywhere else 🧡

For three hours on Nov 1, Ocean County families, kids, school groups, and nonprofits filled Community Park with nothing but generosity. You could walk from station to station donating food, packing kits, writing notes, learning about local causes, or just showing up with an open heart.

We were grateful to simply be one of the many organizations invited to take part. Our table was just one stop in a much bigger circle of kindness — and it meant so much to see people of all ages pause, connect, and make cards for rare kids who could use a little encouragement or use our props for our Photo Booth station!

What makes Pointsgiving special is how hands-on it feels. No pressure. No big production. Just a Jersey Shore tradition built on the idea that giving back should be easy, joyful, and something the whole family can do together.

Huge love to for creating this space year after year. It’s the kind of event that stays with you… and one we’re always honored to be part of.

27/11/2025

This year… we rose.
Together.
For rare kids, rare families, and every moment that reminded us why community matters 💙

Thank you for believing in this movement… for showing up… for helping us build a future where every rare child gets to shine a little brighter.

Here’s to more impact ahead ✨

25/11/2025

Awareness opens the door - your generosity helps us take action. Every contribution fuels our mission to support families, build resources, and bring more hope into the rare community.
Big or small, your gift truly matters.

Your donation helps Rare Genes Movement fund micro-grants, inclusive projects, and vital resources for families facing rare genetic disorders. Every contribution turns awareness into action—bringing hope, connection, and tangible support where it’s needed most.