KrabbeConnect

A 501(c)(3) nonprofit dedicated to bridging the gap between research and patients & families affected by Krabbe Disease

[KrabbeConnect @KrabbeConnect]

#krabbeconnect thanks Dr. Jim Wilson for his work in rare diseases and looks forward to learning more about how his company, Gemma Biotherapeutics, can help bring gene therapy to #krabbedisease.

[KrabbeConnect @KrabbeConnect]

Great news to start the week. We look forward to more states adding #krabbedisease to their #newbornscreening panel by the end of 2025. Stay tuned for more details on #Utah.

[KrabbeConnect @KrabbeConnect]

@RareDiseases #washington please establish an #RDAC. It will facilitate partnerships that can reduce the financial burden of treating rare diseases through coordinated efforts and help improve care for your residents.

[KrabbeConnect @KrabbeConnect]

We want your opinion! If you didn't receive our survey, email us at [email protected] and we will be sure you get it.

[KrabbeConnect @KrabbeConnect]

We're excited to hear updated research about lysosomal storage diseases and connect with individuals worldwide working on #krabbedisease.  Please reach out now, by email, to set up a meeting at @WORLDSymposia

[KrabbeConnect @KrabbeConnect]

Did you know Krabbe disease is an autosomal recessive disorder? Discover the facts about autosomal recessive diseases in our YouTube video.

https://t.co/90k06nJZ4B

[KrabbeConnect @KrabbeConnect]

Tickets are now available! Ten Candles, Endless Hope: Tori’s Birthday Benefit to #curekrabbe - KrabbeConnect https://t.co/VO2aGKr7xH

[KrabbeConnect @KrabbeConnect]

Come join us for the 4th Annual BrAvery for Avery Golf Tournament - KrabbeConnect https://t.co/pNvlMIbJXX

[KrabbeConnect @KrabbeConnect]

This is one of our most loved informational videos. We invite you to share this 4.42-minute video to help others better understand #krabbedisease

Understanding Krabbe Disease - KrabbeConnect https://t.co/cvnWF3UQdv

[KrabbeConnect @KrabbeConnect]

Navigating #krabbedisease comes with additional costs. Don't forget, #krabbeconnect is here to help - you do not have to carry the full burden. Learn more about how we're able to assist.
https://t.co/sFw2s9QBBm

[KrabbeConnect @KrabbeConnect]

Get registered by Saturday, March 30th to save BIG on conference fees. All of the details of the costs can be found on our website.

Don't wait to register! Scholarships are available!

https://t.co/E04nd3t7dJ

[KrabbeConnect @KrabbeConnect]

At KrabbeConnect we never want to forget about any loved one diagnosed with Krabbe disease and gone before we could #curekrabbe.

Krabbe Disease Heroes - KrabbeConnect https://t.co/JhtNQLFtCS

[KrabbeConnect @KrabbeConnect]

Do you want to be the next board VP? Send us your resume at [email protected]

Not interested but know someone who might? We would love for you to share this post!

#curekrabbe #openboardposition

[KrabbeConnect @KrabbeConnect]

This might be just the fun you're looking for and, it supports a good cause - to #curekrabbe

Buy your bracket/s now and complete your bracket/s when they open on March 17th. Don't worry, we will send a reminder email!

Let the March Madness begin!

https://t.co/9ufhbD48Ir

[KrabbeConnect @KrabbeConnect]

ICYMI great article!

[KrabbeConnect @KrabbeConnect]

Please help us welcome two new board members to #krabbeconnect - Tammy Wilson and Amy White
We are always grateful to those who share their time and talents with us to help #curekrabbe.

[KrabbeConnect @KrabbeConnect]

Take a moment to nominate your hero in honor of #RareDiseaseDay2024

[National Organization for Rare Disorders (NORD) @RareDiseases]

Less than one week left to nominate your rare disease hero for a #RareImpactAward!

Nominate an individual or organization who has made great strides to benefit the #RareDisease community before Wednesday, February 14: https://t.co/dlli9I60Bt

[KrabbeConnect @KrabbeConnect]

The survey does NOT collect identifying information to protect the integrity of the data collection. The goal of this project -to improve support and resources for Krabbe families and affected individuals.
Click here to take the survey by February 15th- https://t.co/947e7UaUXJ

[KrabbeConnect @KrabbeConnect]

Happy Friday! We have 6 football squares left for the Super Bowl. Your participation helps support those living with #krabbedisease while cheering on your favorite football team. #curekrabbe

https://t.co/AmePIHEZIm

[KrabbeConnect @KrabbeConnect]

Check out this article on #krabbedisease newborn screening. This publication was available just before the ACHDNC meeting today. ACHDNC voted 10-3 to add Krabbe disease to the RUSP. A monumental win! Next step - let's #curekrabbe!

https://t.co/oeZCJKo31k