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Lesa Brackbill is representing KrabbeConnect this week at the NORD Rare Diseases & Orphan Products Breakthrough Summit. She is connecting with leaders across the rare disease community, participating in important conversations, and advocating for the needs of families impacted by Krabbe disease.
From advancing patient registries and strengthening rare disease policy to improving diagnosis and exploring future treatment opportunities, these conversations are essential to moving our community forward.
Lesa is at NORD to listen, learn, build partnerships, and ensure the voices of Krabbe families remain part of the conversation as we work toward better outcomes and more treatment options.
#KrabbeConnect #NORDSummit #RareDisease #krabbedisease ...
2 CommentsComment on Facebook
At KrabbeConnect, we are committed to amplifying the voices of patients and families, filling critical gaps in research, and providing trusted information and support throughout the Krabbe journey.
To everyone who gives, advocates, collaborates, shares our mission, and stands alongside families navigating this devastating disease — thank you. Your support helps turn unanswered questions into research, isolation into connection, and hope into meaningful action.
💙 Thank you for being part of the KrabbeConnect community.
#krabbeconnect #KrabbeDisease ...
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🎄 Applications Are Open for the Krabbe Family Holiday Grant Program! ❤️
The holidays can bring added financial stress for families navigating Krabbe disease. At KrabbeConnect, we want to help ease some of the ongoing financial burdens of Krabbe disease.
❤️ Know a family who could benefit? Please share this opportunity with families affected by Krabbe disease.
🤝 Could your employer make a difference? We are also looking to connect with employers and businesses interested in sponsoring this program. Your support can help bring a little extra comfort, joy, and relief to families facing the challenges of Krabbe disease during the holidays.
Every contribution helps us reach more families and remind them they are not alone.
👉 Learn more about the program and application at KrabbeConnect.org ...
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🚚🍔 Calling all food trucks and craft vendors! 🛍️🎨
Come Shop, Eat & Rally to #curekrabbe! 💙🧡
We’re bringing the community together for a day of shopping, delicious food, and FUN — all for a cause close to our hearts!
Join us as we rally around Kinsley, who is fighting Krabbe disease, and honor her big brother Jaxon, who sadly lost his battle.
✨ Vendor spaces are available!
🛍️ Craft Vendors: $40
🚚 Food Trucks: $120
Be part of something bigger than a community event. Help us raise awareness, spread hope, and make a difference for families impacted by Krabbe disease.
Register here: secure.qgiv.com/for/craftingacureforkrabbedisease/event/shopeatrallytohelpcurekrabbe/
#ShopEatRally #CureKrabbe #KrabbeConnect #FoodTruckEvent CraftVendors ...
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💙 A new Krabbe disease diagnosis can feel overwhelming, but no family should have to navigate the journey alone.
Through Ella’s Welcome Wish, KrabbeConnect welcomes newly diagnosed families with a care package filled with comfort, helpful resources, and a reminder that they are part of a community that cares. 💙
Know a family who could use support? Help us spread the word!
Learn more or request a free welcome packet: krabbeconnect.org/programs-events/ellas-welcome-wish/ ...
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💙 DID YOU KNOW? 💙
📅 December 1 is Giving Tuesday! A global day of generosity and a wonderful opportunity to make a difference in the lives of those who need it most.
✨ Did you know we’re part of Thrivent? Through Thrivent’s charitable giving opportunities, there are even more ways to support our mission!
🏆 And did you know we’ve earned a Gold Seal of Transparency from Candid? This recognition reflects our commitment to transparency, accountability, and showing our supporters the impact of their generosity.
This Giving Tuesday, your generosity can help us move mountains for the individuals and families we serve. Every gift makes a difference, and together, we can create meaningful change! 💙
💙 Mark your calendar for December 1 and join us in making an impact!
#givingtuesday #curekrabbe ...
1 CommentsComment on Facebook