A 501(c)(3) nonprofit dedicated to bridging the gap between research and patients & families affected by Krabbe Disease
Joined February 2018
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#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.
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.
We want your opinion! If you didn't receive our survey, email us at [email protected] and we will be sure you get it.
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
Did you know Krabbe disease is an autosomal recessive disorder? Discover the facts about autosomal recessive diseases in our YouTube video.
youtu.be/UtDg-3BH5Qw?si=R5Kn…
Tickets are now available! Ten Candles, Endless Hope: Tori’s Birthday Benefit to #curekrabbe - KrabbeConnect krabbeconnect.org/kcevent/te…
Come join us for the 4th Annual BrAvery for Avery Golf Tournament - KrabbeConnect krabbeconnect.org/kcevent/4t…
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 krabbeconnect.org/krabbe-dis…
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.
krabbeconnect.org/community-…
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!
krabbeconnect.org/kcevent/th…
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 krabbeconnect.org/our-heroes…
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
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!
krabbeconnect.org/kcevent/20…
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.
Take a moment to nominate your hero in honor of #RareDiseaseDay2024
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: bit.ly/3HvpEYM
ALT Background of photos from the 2023 Rare Impact Awards with text reading "Nominate Your Rare Hero Today! Now Accepting Nominations for the 2024 Rare Impact Awards" with NORD logo.
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- tinyurl.com/kdgraduateprojec…
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
krabbeconnect.org/kcevent/an…
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!
mdpi.com/2409-515X/10/1/10
ICYMI - #raredisease photo contest in honor of Rare Disease Day on February 29th. Submit your photo by January 31st.
#curekrabbe #RareDiseaseDay
In honor of #RareDiseaseDay, @eurordis is holding an international photo contest open to all nationalities, ages and #RareDiseases. Submit your photo today to show the world what it is like to live with a rare disease. Enter by Wednesday, January 31:
bit.ly/3HiPsHo
