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Next Step

@nextstepfund

501(c)(3) - We offer free community, music and mentorship programs for young people, ages 13-29, living with cancer, HIV, and rare genetic disorders.

 Cambridge, MA
linktr.ee/NextStepFund
Joined December 2010
  • Tweets14.3K
  • Following741
  • Followers857
6.1KMedia
Photo by Next Step (@nextstepfund)Photo by Next Step (@nextstepfund)Photo by Next Step (@nextstepfund)Photo by Next Step (@nextstepfund)Photo by Next Step (@nextstepfund)Photo by Next Step (@nextstepfund)Photo by Next Step (@nextstepfund)Photo by Next Step (@nextstepfund)Photo by Next Step (@nextstepfund)Photo by Next Step (@nextstepfund)
🌍 It’s #RareDiseaseDay 2026! 💜 Today we stand with the 300 million people living with a rare disease. Together, we’re showing our colours, raising awareness, and inspiring change by talking about what equity means to us. 👉 Read more: go.rarediseaseday.org/NEWS
“It’s Rare Disease Day!” with the Rare Disease Day hand logo and the website” The background is a blue and purple gradient.

ALT “It’s Rare Disease Day!” with the Rare Disease Day hand logo and the website” The background is a blue and purple gradient.

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Join @triagecancer for a FREE webinar about planning ahead for health care on 6/26! This webinar explains important health care topics to consider, such as home health care, advance care planning, and hospice care. triagecancer.org/Webinars #TriageTalks #CancerRights #HealthCare
Image from Elephants and Tea (@ElephantsTea)
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The number of people living with a rare disease is equivalent to the third largest country in the world. 🌎 On #RareDiseaseDay, we aim to highlight their voices and raise awareness about their experiences. Download our Infographics: rarediseaseday.org/downloads…
Image from Rare Disease Day (@rarediseaseday)
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Delayed & misdiagnosis can lead to an exorbitant amount of medical fees. Share this post to raise awareness about these financial challenges & advocate for better access to affordable healthcare. Learn about World Rare Disease Day: go.globalgenes.org/RDD-2024 #RareDiseaseDay
Having any medical issues is expensive, but did you know that having a rare disease can be even more costly? Delayed and misdiagnosis can lead to an exorbitant amount of medical fees. Share this post to raise awareness about the financial challenges faced by those with rare diseases and advocate for better access to affordable healthcare. To learn more about World Rare Disease Day, click here: https://go.globalgenes.org/RDD-2024 #RareDiseaseDay #ChildhoodHealth #Genetics #GeneticCounselor #FamilyHistory #RareDisease #CareAboutRare #RareDiseaseDay2024

ALT Having any medical issues is expensive, but did you know that having a rare disease can be even more costly? Delayed and misdiagnosis can lead to an exorbitant amount of medical fees. Share this post to raise awareness about the financial challenges faced by those with rare diseases and advocate for better access to affordable healthcare. To learn more about World Rare Disease Day, click here: https://go.globalgenes.org/RDD-2024 #RareDiseaseDay #ChildhoodHealth #Genetics #GeneticCounselor #FamilyHistory #RareDisease #CareAboutRare #RareDiseaseDay2024

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Our CEO, Charlene, our CMO, Nicole, our finance and operations lead, Bethany, and partner/advocate Kelly Ranallo ( founder and board member @rarekc , founder of Turner Syndrome Alliance, and advocacy for @sanofi ) are all ready to kickoff another day of #RareDiseaseWeek!
Our CEO, Charlene, our CMO, Nicole, our finance and operations lead, Bethany, and partner/advocate Kelly Ranallo ( founder and board member @rarekc , founder of Turner Syndrome Alliance, and advocacy for @sanofi ) are all ready to kickoff another day of #RareDiseaseWeek!

ALT Our CEO, Charlene, our CMO, Nicole, our finance and operations lead, Bethany, and partner/advocate Kelly Ranallo ( founder and board member @rarekc , founder of Turner Syndrome Alliance, and advocacy for @sanofi ) are all ready to kickoff another day of #RareDiseaseWeek!

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It is Day 3 of #RareDiseaseWeek and Capitol Hill day! Here is a rundown of what Mackenzie will be up to today, including talking to senators and representatives about the 5 legislative asks for the rare disease community! #RareDC2024 #RareDiseaseDay #CareAboutRare #CapitolHill
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We heard from Susanne, a rare patient diagnosed with 2 #RareDiseases, her journey to diagnosis, and periods of feeling isolated. “In sharing my story, I hope to shed light on others who are suffering in the darkness looking for answers…” Read her story: go.globalgenes.org/RDD-SYS-2
We heard from Susanne, a rare patient diagnosed with 2 rare diseases, and her journey to diagnosis and her periods of feeling isolated. “In sharing my story, I hope to shed light on others who are suffering in the darkness looking for answers. Keep fighting…” To read Susanne’s full story, click here: https://go.globalgenes.org/RDD-SYS-2 #RareDiseaseDay #RareDiseaseAwareness #RareDiseases #RareDiseaseDiagnosis #ShareYourStory #RarePatient #BehcetSyndrome #IdiopathicGastroparesis #RareDiseaseCommunity

ALT We heard from Susanne, a rare patient diagnosed with 2 rare diseases, and her journey to diagnosis and her periods of feeling isolated. “In sharing my story, I hope to shed light on others who are suffering in the darkness looking for answers. Keep fighting…” To read Susanne’s full story, click here: https://go.globalgenes.org/RDD-SYS-2 #RareDiseaseDay #RareDiseaseAwareness #RareDiseases #RareDiseaseDiagnosis #ShareYourStory #RarePatient #BehcetSyndrome #IdiopathicGastroparesis #RareDiseaseCommunity

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Join us as we discuss the urgent need for a sustainable system to support the patient organisations in the #RareDisease space. We have to engage society and industry to work with these charities in a new way. bit.ly/RARE-REVinar-Burnout #RDD2024 #RareDiseaseDay #Webinar
Image from RARE Revolution Magazine® (@RareRevolutionM)
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One week to go until the rarest day of the year! 🦓 It's not too early to #ShowYourStripes and spread the word about #RareDiseaseDay. Download NORD's social media toolkit, lawn signs, and more and post your photos and stories with the hashtag! bit.ly/49BBMmQ
Blue background with cartoon zebras and text reading, "Show Your Stripes on Rare Disease Day February 29, 2024" with NORD and Rare Disease Day logo and, "Learn more: rarediseaseday.us."

ALT Blue background with cartoon zebras and text reading, "Show Your Stripes on Rare Disease Day February 29, 2024" with NORD and Rare Disease Day logo and, "Learn more: rarediseaseday.us."

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🎙️ Natalia from Bulgaria shares her 14-year journey with Pulmonary Hypertension, reflecting courage and community. Join us on Rare on Air Stories to hear her inspiring tale. 🌟 Listen here: eurordis.org/rare-on-air/ #RareOnAirStories
Image from Rare Disease Day (@rarediseaseday)
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Why raise awareness? Shedding light on rare diseases is vital. Limited healthcare knowledge leads to delayed diagnoses, while expensive treatments pose financial burdens. Advocacy can drive better resources, research, and quality of life. 💙 #RareDiseaseDay #ShareYourColours
Image from Rare Disease Day (@rarediseaseday)
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Missed our webinar or need a reminder about what was said? The recording is out now! 🎉 We covered a variety of topics, including medical gaslighting, social media strategy, past initiatives and much more! 💡 Listen here: youtube.com/watch?v=FYTaTANl… #RareDiseaseDay
Image from Rare Disease Day (@rarediseaseday)
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Brave but not in the way society says we are. Brave in the way we show up despite every ounce of us screaming, “NO!”… Brave in all the quiet moments we want to give up… but we keep pushing forward anyway.🩷
Image from Chelsey Gomez | Artist & Cancer Community Advocate (@ohyouresotough)
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Planning for a future after cancer made it uncertain that you’d *even* have a future is a weird limbo. 🤍 sending love to my cancer friends who feel this too.
Image from Chelsey Gomez | Artist & Cancer Community Advocate (@ohyouresotough)
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Many times what we express on the outside doesn’t match up to what we are screaming on the inside. If all you did today was survive - that’s enough. You are enough. 🫂🤍
Image from Chelsey Gomez | Artist & Cancer Community Advocate (@ohyouresotough)
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#GivingTuesday exists to build the world we all imagine to be possible. What's your vision for a society that centers radical generosity? Tell us in the comments or tag us in your story post.
Image from GivingTuesday (@GivingTuesday)
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One of our fave traditions of YA Cancer Gabfest has to be the yearly scavenger hunt! No matter where you call home, you can join this completely online scavenger hunt through the free app, Goosechase, brought to you by E&T and @cactuscancersoc: cactuscancer.org/join-the-ya…
Image from Elephants and Tea (@ElephantsTea)
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Today's new article - "My Hidden Secret" Read it here: tinyurl.com/5dxn8rns #ayacancer #cancerpatients #caregivers #cancersurvivors
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👥 Join our #CommunityCheckin Support Call, By and For, #sicklecellwarriors! A safe space where we connect, share stories, and forge new friendships within our #sicklecelltribes! 🕐 Saturday, 1 p.m. CST, Register via QR code or sicklecellmidwest.org. #sicklecellmidwest
Image from UEO Sickle Cell (@UEOSickleCell)
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Does cancer make you feel more anger or more sadness?
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