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Smart Patients

@smartpatients.bsky.social
138 followers 469 following 430 posts

Smart Patients - a peer-to-peer support forum where patients learn from each other about treatments, challenges, and how it all fits into the context of their experience. www.smartpatients.com linktr.ee/smartpatients

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Smart Patients @smartpatients.bsky.social · 16h
Today is #WorldDenseBreastDay. Many women first learn the word "dense" from a line on their mammogram report, often with little explanation of what it means for them. Check out these facts provided by My Density Matters. Talk with women who understand at #SmartPatients: ow.ly/fuIZ50ZSTMN
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Smart Patients @smartpatients.bsky.social · 29/09/2026
#WorldHeartDay is a good moment to think about how cardiovascular disease often intersects with cancer treatment, diabetes, autoimmune conditions, and the realities of caregiving. Talking to others helps to increase knowledge, build confidence, & inspires healthier heart choices. #SmartPatients
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Smart Patients @smartpatients.bsky.social · 28/09/2026
Don’t forget! Our #AskTheExpert series with Dr. Benjamin Bates, Navigating Transitions in Care, kicks off Wednesday, Sep. 30 and runs through Friday, Oct. 2. Join us on Smart Patients: ow.ly/AkcQ50ZRZxY And thank you the Elixir Fund for helping to organize! #Survivorship #AYACancer
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Smart Patients @smartpatients.bsky.social · 27/09/2026
Living with myeloma over the long haul often means moving from one treatment to the next. Every jump buys time, and time opens the door to what science brings next. If you or someone you love is living with multiple myeloma, there is a place for you here. ow.ly/p90v50ZRSZG
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Smart Patients @smartpatients.bsky.social · 26/09/2026
"Should I bank my tumor tissue now, in case a trial opens up later?" That was one of the first questions asked during a recent Ask the Expert conversation on KRAS and pancreatic cancer hosted in partnership with the Pancreatic Cancer Action Network. Read more here: ow.ly/tcP150ZRCRp
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Smart Patients @smartpatients.bsky.social · 25/09/2026
This year’s #WorldLungDay theme focuses on a lifetime of lung health. Click her to read more about what #SmartPatients share with each other over the years: research.smartpatients.com/resource… #FreeMEFromLungCancer #LCFA #LungCancerConnection
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Smart Patients @smartpatients.bsky.social · 24/09/2026
#WorldBreastDensityDay is next week. Did you know that women with dense breast tissue are 5-6 times more likely to get breast cancer? Great to meet new friends and Leslie from My Density Matters.
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Smart Patients @smartpatients.bsky.social · 23/09/2026
What does "survivor" mean? Join us for a for a candid, asynchronous & virtual week-long conversation on #SmartPatients with Meg McQuarrie, Co-Founder & Executive Director, Elixir Fund & Dee Sparacio, Founder, Women of Teal. Here's the link: ow.ly/UW6K50ZQlOW #Survivorship #LivingWithIt
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Smart Patients @smartpatients.bsky.social · 22/09/2026
When a condition is rare, finding someone who has been in your shoes takes awhile. That's why we started, in cooperation with The Desmoid Project and DTRF, a community designed to make it easier to bring people affected by desmoid tumors together. Come say a virtual hello: ow.ly/qmOu50ZPSk5
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Smart Patients @smartpatients.bsky.social · 21/09/2026
Today is #WorldAlzheimersDay. According to the Alzheimer's Association, an estimated 7.4 million Americans age 65 and older are living with Alzheimer's in 2026. Members of #SmartPatients discuss this situation with honesty, humor, and practicality. Join us: ow.ly/xA2A50ZPt7P
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Smart Patients @smartpatients.bsky.social · 20/09/2026
What would you say to your oncologist after he delivered bad news? This is what a Smart Patient member said. It’s a great example of how patients are an underutilized resource in healthcare. It’s how a community can make everyone going through a tough diagnosis a little more human.
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Smart Patients @smartpatients.bsky.social · 19/09/2026
What a great way to start the morning yesterday with MIB Agents Osteosarcoma Alliance & KIDS V CANCER & an amazing group of young adults heading to Capitol Hill. Seeing them take charge & prep to advocate for the Accelerating Innovation (AI) for Kids with Cancer Act was inspirational & hopeful!
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Smart Patients @smartpatients.bsky.social · 18/09/2026
The @joeyswings.bsky.social community is up and running on #SmartPatients. Families and caregivers navigating pediatric kidney cancer have a dedicated space for peer-to-peer support. Join us here: ow.ly/JVsc50ZNuXO #ChildhoodCancerAwarenessMonth
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Smart Patients @smartpatients.bsky.social · 17/09/2026
For #WorldPatientSafetyDay, we’re resharing a story based on a conversation with patient safety advocate Sorrel King and quality improvement leader Marty Hatlie: ow.ly/qHIv50ZO5wk Safety is a culture where patients and families are treated as full members of the care team. #SmartPatients
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Smart Patients @smartpatients.bsky.social · 16/09/2026
A childhood or AYA cancer diagnosis reshapes a life well beyond active treatment. Part 1 of our two part Navigating Transitions in Care series, brings our community together to discuss transitions in care. Thank you to the Elixir Fund for helping to organize! Join us: ow.ly/Scau50ZO0sU
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Smart Patients @smartpatients.bsky.social · 15/09/2026
Today is #WorldLymphomaAwarenessDay. The #SmartPatients lymphoma communities are here for you: ow.ly/T0nj50ZNukU They’re the ones who told us about this upcoming free virtual conference for patients, survivors, and care partners: ow.ly/SImj50ZNukT
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Smart Patients @smartpatients.bsky.social · 14/09/2026
Big news! Today is the first time we're launching a partnership with two organizations at once: #TheDesmoidProject and the #DesmoidTumorResearchFoundation. Living with a rare disease can be isolating. The community is open now to patients and caregivers worldwide: ow.ly/1aWE50ZMUo8
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Smart Patients @smartpatients.bsky.social · 13/09/2026
At Smart Patients, people trade encouragement with information. A setback shared becomes something to talk through. Peer support creates a chain reaction of shared healing. #SmartPatients #PeerSupport #LivedExperience
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Smart Patients @smartpatients.bsky.social · 12/09/2026
It's #OvarianCancerAwarenessMonth. Here are useful resources. From #SmartPatients: ow.ly/zj7350ZMEcM From Dee Sparacio ow.ly/q0ip50ZMEcH Stronger Together!
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Smart Patients @smartpatients.bsky.social · 11/09/2026
Today is a good day to appreciate how important it is to show up for each other, consistently. A simple text that says "thinking of you" matters. Keeshia Jones of ABCD: After Breast Cancer Diagnosis joined #SmartPatients to talk about what else being consistent means: ow.ly/I7TZ50ZM6x5
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Smart Patients @smartpatients.bsky.social · 10/09/2026
Quick reminder! We've partnered with the American Parkinson Disease Association to support their free two-day virtual conference. Full agenda: ow.ly/HMZv50ZLCIn Join #SmartPatients to continue the convo before, during & after the event: www.smartpatients.com/site/partners…
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Smart Patients @smartpatients.bsky.social · 09/09/2026
New KRAS treatment options are changing what's possible for pancreatic cancer patients. Thanks to the Pancreatic Cancer Action Network, #SmartPatients were able to ask GI oncologist Dr. Noelle LoConte questions about these findings. Read more: ow.ly/r0Ym50ZKItk #KRAS #PanCAN
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Smart Patients @smartpatients.bsky.social · 08/09/2026
We’re proud to announce our partnership with @joeyswings.bsky.social during #ChildhoodCancerAwarenessMonth. Together, we will extend peer-led support to families & caregivers navigating pediatric kidney cancer and support Joey's Wings' vital advocacy & research initiatives in our community. Welcome!
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Smart Patients @smartpatients.bsky.social · 07/09/2026
Thank you to all the #SmartPatients who make peer-to-peer connections happen. Many of you manage your diagnosis like a second job, so be sure to take extra care of yourselves today and appreciate all that you do to improve health outcomes for all. Happy Labor Day! #LaborDay #Gratitude
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Smart Patients @smartpatients.bsky.social · 06/09/2026
Anyone who’s received a cancer diagnosis knows it changes more than physical health. It changes relationships with partners, parents, siblings, children, and friends. If this speaks to you, Imerman Angels hosting a webinar on the topic later this month. Register here: ow.ly/9w1G50ZJuGl
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Smart Patients @smartpatients.bsky.social · 05/09/2026
Metastatic cancer is something every cancer patient worries about. In our latest "Living With It," Keeshia Jones of ABCD: After Breast Cancer Diagnosis led #SmartPatients members through a week of conversation about what that reality feels like: research.smartpatients.com/resources
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Smart Patients @smartpatients.bsky.social · 04/09/2026
We love hearing about #SmartPatients meeting face-to-face: a chance overlap at a conference, a stop added to a road trip to say hello, a visit planned months in advance. For each visit, members tell us the conversation "could have lasted all night." ow.ly/Pf8C50ZHoLW #CommunityBuilding
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Smart Patients @smartpatients.bsky.social · 03/09/2026
Welcome to the #ChondrosarcomaFoundation, our partner that supports patients, families, & caregivers facing this rare bone cancer. This is why we're excited: csfshayna.org/site/wp-content/uploa… ow.ly/qYwg50ZHmEm Join us: ow.ly/TQ4K50ZHmEn
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Smart Patients @smartpatients.bsky.social · 03/09/2026
Research shows that human connection acts as a powerful medicine for longevity. Why not reach out and connect with others to ask how their summer was? Find people who support you, like the members of #SmartPatients do for each other. #HealthyAgingMonth
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Smart Patients @smartpatients.bsky.social · 01/09/2026
Caregiving is its own kind of expertise. Our partners at the Family Caregiver Alliance Caregiver Alliance are hosting two free events to focus on how to manage expectations &roles as a caregiver, Here is the link to register: ow.ly/iP6x50ZHl26 #FamilyCaregiverAlliance #SmartPatients
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Smart Patients @smartpatients.bsky.social · 31/08/2026
Wellness plans begin with a focus on habits: more sleep, more movement, more discipline. Don’t forget to include finding someone who understands! #SmartPatients share what they've learned, so someone new to a diagnosis doesn't have to figure it out alone. #NationalWellnessMonth #PeerSupport
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Smart Patients @smartpatients.bsky.social · 30/08/2026
Grief has no fixed timeline and no single shape. At Smart Patients, people share their hardest days and how they got through them. Thank you to everyone who has shown up for someone else, even while carrying their own grief. #NationalGriefAwarenessDay #SmartPatients #PeerSupport
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Smart Patients @smartpatients.bsky.social · 29/08/2026
We asked #SmartPatients if they've met a fellow member in person. Short version of 1 story: 2 esophageal cancer patients spent 100 nights on video calls supporting each other. Eventually a flight across the Pacific meant they could meet in person. research.smartpatients.com/resources
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Smart Patients @smartpatients.bsky.social · 28/08/2026
According to Pew, roughly 34% of Americans use AI chatbots for at least one health or medical reason. In our Ask the Expert conversation, hosted with the Autoimmune Association, Dr. Marjolein Klaassen shared practical guidance for using AI tools without being misled: ow.ly/OVzQ50ZFIyz
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Smart Patients @smartpatients.bsky.social · 27/08/2026
What have you noticed about how people process hard news? For Smart Patients, denial can be part of what keeps someone going to work, parenting or showing up while their mind catches up with a diagnosis that changed everything. It’s pacing to get there in your own way, on your own timeline.
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Smart Patients @smartpatients.bsky.social · 26/08/2026
What steadies you between hospital visits and hard days? In our Smart Patients community, people living with serious illness share their own sources of calm. Come connect, learn, and support one another through serious and chronic illness at www.smartpatients.com
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Smart Patients @smartpatients.bsky.social · 25/08/2026
Three days of walking together may seem like a small win. But, for someone managing a serious illness, it's real progress. In our Smart Patients communities, members share moments like this one, and other members know instinctively how much it means. This is what day-to-day peer support looks like.
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Smart Patients @smartpatients.bsky.social · 24/08/2026
It’s a new week & we have exciting news about a new partnership! #SmartPatients is partnering with the #ChondrosarcomaFoundation to expand connections for patients and their families affected by their rare bone cancer. Join us: ow.ly/zCsx50ZBZ1z
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Smart Patients @smartpatients.bsky.social · 23/08/2026
Useful tips in healthcare come from shared ideas in conversation, in addition to studies. Smart Patients is a window into what happens to people living with serious illnesses every day. Members share how to handle carrying physical and emotional stress based on their own experiences. #SmartPatients
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Smart Patients @smartpatients.bsky.social · 22/08/2026
In a recent Ask the Expert conversation, in partnership with the Autoimmune Association, we explored the science of how AI reads complex biological data. Read the full story: ow.ly/sKwz50ZCHWe #AutoimmuneAssociation #AIinHealthcare #SmartPatients
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Smart Patients @smartpatients.bsky.social · 21/08/2026
Managing a chronic condition takes real work. Doing it without anyone who understands what you are going through takes more. Smart Patients is here for patients and caregivers who want to learn from others in the same boat and feel less alone. #NationalSeniorCitizensDay #SmartPatients
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Smart Patients @smartpatients.bsky.social · 20/08/2026
#SmartPatients and the #AutoimmuneRegistry co-authored a piece on myasthenia gravis pairing the registry's numbers on diagnostic delay with what our community had been saying about living through it. Quantitative scale & qualitative depth don't have to be a trade-off. ow.ly/Q5wY50ZBCMF
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Smart Patients @smartpatients.bsky.social · 19/08/2026
Thank you to the Wilmot Cancer Institute at the UofR Medical Center for welcoming #SmartPatients for a tour. We are grateful for the chance to see Wilmot's work firsthand and to share information about how to connect with others who understand what they are going through between appointments.
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Smart Patients @smartpatients.bsky.social · 18/08/2026
Today is #WorldBreastCancerResearchDay. The date (8/18) stands for the statistic that 1 in 8 women and 1 in 833 men will face a breast cancer diagnosis in their lifetimes. #SmartPatients have also found hope in scientific progress: ow.ly/NPQb50ZAF1X #BreastCancer
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Smart Patients @smartpatients.bsky.social · 17/08/2026
Living with a condition builds a kind of expertise that no textbook or training program can fully capture. It comes from years of managing symptoms, navigating treatment decisions, & learning what works. #SmartPatients is where people teach each other what they have lived through.
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Smart Patients @smartpatients.bsky.social · 16/08/2026
Survival brings its own adjustment. The vigilance that carries a person through diagnosis & treatment does not switch off just because the crisis has passed. Learning to feel safe again is its own kind of work. Teach others about what care looks like after the acute phase: ow.ly/mSRV50Zz4cl
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Smart Patients @smartpatients.bsky.social · 16/08/2026
Myasthenia gravis is highly treatable, yet it routinely takes years to identify. In this new piece co-authored with the #AutoimmuneRegistry, we looked at what happens when you put two registry data and community voices side by side: ow.ly/qJZn50ZyZgH #MyastheniaGravis #SmartPatients
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Smart Patients @smartpatients.bsky.social · 14/08/2026
Diagnosed with breast cancer in 2018, Keeshia Jones didn't just get through treatment. She became an ABCD: After Breast Cancer Diagnosis Mentor, matching newly diagnosed patients with the kind of personal, immediate support she wished she'd had. Join us: ow.ly/zHVg50Zx9E9 #ABCD
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Smart Patients @smartpatients.bsky.social · 13/08/2026
Fire in the belly. Steel in the spine. Those aren’t symptoms. They’re part of the infrastructure of Smart Patients that members build for each other. #SmartPatients #PeerSupport #LivedExperience
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Smart Patients @smartpatients.bsky.social · 12/08/2026
There are a range of ways people cope with a serious diagnosis. That’s because there’s no single right way to do it. At Smart Patients, members find each other wherever they are in that range. Learn more: www.smartpatients.com #SmartPatients #PatientCommunity #LivedExperience
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