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#CareAboutRare
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Meet E.J. McCaffrey, Client Solutions Director at rareLife. His rare superpower is foresight through collaboration, bringing teams together to advance rare disease science for patients and families, guided by a personal connection to the rare disease community. #rareLifeTeamSpotlight #CareAboutRare
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Today we're saying a big thank you to Bethan, who raised £160 for Alex TLC making and selling Gonks in support of her brother, Sam, who lives with adrenoleukodystrophy (ALD).
Thank you, Bethan!
#AlexTLC #HelpToCope #HelpToHope #Leukodystrophy #Fundraising #ThankYou #CareAboutRare
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You could be unlocking extra funds for rare disease research just by donating. Ask your HR department today and use the QR Code (or this link: med13l.org/donate/) to get started!
#CorporateMatching #MED13L #RAREDISEASERESEARCH #careaboutrare #med13lsyndrome #RareDisease
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Wishing our clients, friends, and colleagues a joyful holiday season. We celebrate the patients, advocates, and caregivers who inspire our work and look forward to delivering innovative solutions that make a difference in the year ahead.
#HappyHolidays #WeKnowRare #CareAboutRare #ForUsItsPersonal
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We're grateful for our family, friends, and the rare disease community that inspires us every day. rareLife solutions wishes you a Thanksgiving full of comfort, joy, and meaningful moments.
#HappyThanksgiving #WeKnowRare #CareAboutRare #RareDiseaseAwareness #ForUsItsPersonal
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Miles is excited for school this morning! #careaboutrare #soundon #smilesformiles #phelanmcdermidsyndrome
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It's #WorldChildrensDay
We'd like to take this opportunity to celebrate all the amazing children in our Alex TLC community 💙
#AlexTLC #HelpToCope #HelpToHope #Leukodystrophy #CareAboutRare
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29th Feb, 2026. #ZebraTales #CareAboutRare. @globalgenes.bsky.social
" The Shadow on the Eye" is a heart-stirring story that masterfully weaves two compelling threads: a tender exploration of multi-generational family bonds & an urgent, high-stakes scientific journey to cure LCA10
Read @ ei-lca.com
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🦋 Care About Rare
Wearing hope. Fighting together.
Raise awareness in Comfort Colors style. 💙
👇
urbanteewear.etsy.com/listing/4344...
#RareDiseaseDay #BlueRibbon #CareAboutRare #AwarenessShirt #ComfortColors #HealthAdvocacy #ChronicIllness #USAShoppers #RareButStrong #NextDayShipping
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Today is my son Miles 13th birthday.
Today is also the day I learned that the book I wrote in his honor is now also the #1 new release on Amazon in parenting children with disabilities!
For the world all kids deserve ❤️
#BeUnapologeticallyImpatient #careaboutrare #smilesformiles #inclusion #joy
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Community Update!
We are thrilled to extend a warm welcome to our first known v-ATPase family from Serbia!
Help us reach more families and potential partners by sharing this post
#vATPaseAlliance #RareDisease #CommunityStrong #Serbia #GlobalReach #WelcomeHome #CareAboutRare
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Join us for the 2025 #MED13L Research & Family Meetup in Boston! Book your room by June 10th to receive a discounted rate— and remember: admission is FREE for children aged 10 and under!
Visit med13l.org to register today
#RareDiseaseResearch #RareDisease #MED13LSyndrome #CareAboutRare
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📅 We are thrilled to announce the upcoming NORD Rare Disease Scientific Symposium. Join us June 2-3, 2025 in Washington, DC and hear from researchers, clinicians, and industry leaders in #raredisease research.
Register today or learn more at nordscience.org
#MED13L #MED13LSyndrome #CareAboutRare
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Today and every day we are #phelanlucky! #smilesformiles #careaboutrare #22q13 #phelanmcdermidsyndrome
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💙 Today is Rare Disease Day! Join us in honoring patients, families, and caregivers affected by rare diseases.
Visit rarediseaseday.org to learn how you can help raise awareness and support the community. 💡💜
#RareDiseaseDay #CareAboutRare #ShineForRare
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For the more than 7,000 known #rarediseases, 95% are still without FDA-approved treatments. Today is also the last day of #turnersyndromeawarenessmonth. There are approximately 80,000 cases of people with Turner syndrome in the U.S.
#raredisease #careaboutrare
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