About KrabbeConnect
Founders, Stacy Pike-Langenfeld and Anne Rugari, formed KrabbeConnect, a 501 (c)(3) in 2017, to bridge the gap between Krabbe disease science and patient knowledge.
The idea for KrabbeConnect originated from the 2015 Family Centered-Krabbe Translational Research Network meeting (FC-KTRN), a collaborative meeting between researchers and families to aid in solving the uncertainties of Krabbe disease. Through KrabbeConnect, the foundation provides a platform to amplify the voice of patients, aiding researchers and drug developers in accelerating research for better treatments for Krabbe disease.
Learn More about KrabbeConnect
KrabbeConnect’s dedication and efforts will advance research, provide family support, enhance education, and raise awareness, one step at a time. The organization will encourage patients, caregivers, medical scientists, clinicians, industry, and the government to work together quickly to assure a better life for patients. KrabbeConnect believes advances are made when we align ourselves with the same goal, improving the quality of life of those diagnosed with Krabbe disease.
We encourage you to learn more about us by understanding our Mission, Vision, and Multi-Center Approach here. If you have questions or want to connect with us, please Contact Us. We would love to hear from you!
Navigating grief is tricky, no matter your path in #krabbedisease One common theme for families supporting a loved one with this disease is coping with grief.
1. Anticipatory Grief
2. Survivors' Grief
3. Chronic Sorrow
4. Grief of Lost Expectation
and MORE!!!! We encourage you to grab your spot today to be a part of this event here - bit.ly/4iNlV9R
Stipends are available to help families offset costs. If you have additional questions, please reach out soon at info@krabbeconnect.org We are here to help!
#cuerkrabbe #griefjourney ... See MoreSee Less
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Sharing a heartwarming story on #KrabbeDisease — Karla Wolford
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Private flight reunites Minnesota family of girl fighting rare disease
www.inforum.com
Jalyn Wolford, not quite 2 years old, has a rare, serious genetic condition.1 CommentsComment on Facebook
Have you or someone you love been diagnosed with #krabbedisease in the past year? At Ella’s Welcome Wish, we want every family to know they are not alone. You have support, you have resources, and you have a community that cares.
Our #KrabbeConnect board members believe the best part of our welcome kit is the @Warmies. Discover more and fill out our form to receive your welcome package—because support feels amazing!
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Many families affected by rare diseases, along with advocates, doctors, and researchers, are feeling worried as changes in healthcare policies and funding are happening. These changes make things uncertain, especially for those dealing with rare diseases.
#KrabbeConnect invites you to take a moment to learn about the work of the EveryLife Foundation for Rare Diseases and take action. Don’t delay. Take action today. Strong and united voices drives meaningful change.Navigating Uncertainty, the Rare Way
The rare disease community is starting a new week facing a significantly different reality.
More than 20,000 federal roles have been eliminated, impacting agencies like Centers for Disease Control and Prevention (CDC), The National Institutes of Health (NIH), U.S. Food and Drug Administration, Centers for Medicare & Medicaid Services, Health Resources and Services Administration (HRSAgov), Administration Community Living, and others with direct impact on our rare community.
Key changes:
❗ 10,000 HHS staff laid off, hitting science, regulatory, comms, and surveillance divisions hardest
❗HHS terminated the #ACHDNC, which recommends conditions for newborn screening via the RUSP.
This is a critical loss to the system that has helped save lives through early detection.
📣 Take Action - Please Restore the Federal Newborn Screening System: everylifefoundation.quorum.us/campaign/118380/
Our Moment is Now:
Join us in urging the House and Senate to schedule markups of the Give Kids a Chance Act.
📣 Take Action – Support the Reauthorization of the Rare Pediatric Disease Priority Review Voucher Program: everylifefoundation.quorum.us/campaign/110385/
Read full news post here: bit.ly/4cnrgCf
𝗧𝗵𝗲𝗿𝗲 𝗶𝘀 𝗻𝗼 𝗿𝗼𝗮𝗱𝗺𝗮𝗽 𝘁𝗼 𝗵𝗲𝗹𝗽 𝘂𝘀 𝗻𝗮𝘃𝗶𝗴𝗮𝘁𝗲 𝘁𝗵𝗶𝘀 𝘂𝗻𝗰𝗲𝗿𝘁𝗮𝗶𝗻𝘁𝘆. 𝗕𝘂𝘁 𝘆𝗼𝘂 𝗮𝗿𝗲 𝗻𝗼𝘁 𝗮𝗹𝗼𝗻𝗲. 𝗧𝗵𝗲 𝗘𝘃𝗲𝗿𝘆𝗟𝗶𝗳𝗲 𝗙𝗼𝘂𝗻𝗱𝗮𝘁𝗶𝗼𝗻 𝘁𝗲𝗮𝗺 𝗶𝘀 𝘄𝗼𝗿𝗸𝗶𝗻𝗴 𝗳𝗼𝗿 𝘆𝗼𝘂 – 𝗮𝗻𝗱 𝗮𝗹𝗼𝗻𝗴𝘀𝗶𝗱𝗲 𝘆𝗼𝘂. 𝗨𝗻𝗶𝘁𝗲𝗱. 𝗔𝗺𝗽𝗹𝗶𝗳𝗶𝗲𝗱. 𝗔𝗻𝗱 𝗦𝘁𝗿𝗼𝗻𝗴𝗲𝗿 𝘁𝗵𝗮𝗻 𝗲𝘃𝗲𝗿. ... See MoreSee Less
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Let's fill the room with families impacted by #krabbedisease
Register today here - bit.ly/4iNlV9R ... See MoreSee Less
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Happy Friday @followers. We’re resharing this post to give you the opportunity to participate.
Change won’t come without us working together to accomplish better support and outcomes for all #leukodystrophiesWe invite you to share your voice! Akron Children's Hospital LeukodystrophyThe leukodystrophies comprise a group of progressive, genetic disorders mainly affecting the central nervous system (CNS). Most leukodystophies result from a disruption of the growth of the myelin sh Clinic is conducting a survey on the financial burden of leukodystrophies. This survey is brief (15-20 min) and anonymous. The first 100 participants who take the survey will receive a token of appreciation.
Get started here today -
redcap.chmca.org/redcap/surveys/?s=9TTFLNA3A4H4CENF ... See MoreSee Less
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