2 Sep 2025
Understanding Schinzel-Giedion Syndrome: Insights from the TREND Community bit.ly/3JxXAYQ Read now at PatientWorthy.com
#PatientWorthy #RareDisease #TRENDCommunity #Schinzel-GiedionSyndrome #SGS
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5 Nov 2024
š¢ Thank you for sharing your valuable feedback, Trenders! Your voice was clear, and weāre taking it to heart. Based on the poll results, weāre re-evaluating the ERC-502 update and making adjustments to better align with our communityās vision. Stay tuned ā weāll be announcing the new rules soon. š #TrendCommunity #ERC502
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23 Apr 2024
bin ich nicht. bitte assoziier mich nicht mit so einer mental instabilen trendcommunity, danke.
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8 Mar 2024
"CureAP-4 drug discovery for ultra-rare CNS disease" brought to you by #WorldOrphanUSA's Drug Discovery track!
Featuring: Maria Picone, CEO, @trendcommunity
Kasey Edwards, Co-Founder, Community Relations Specialist, @CureAP4
Book early-bird ticketsš tinyurl.com/ytf27dud
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6 Mar 2024
We're gearing up for @OrphanConf in April. Our #abstracts have been submitted, and weāre preparing our workshop with @trendcommunity on personalized endpoints in #PraderWilli Syndrome. Join us in Boston! #patientcenteredoutcomes #sociallistening #raredisease #partnership
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14 Sep 2023
This time on our CEO reshare, it's Maria Picone of TREND Community.
Motivated by her daughterās diagnosis of a rare disease, Maria Picone and her husband, drew on their experience in clinical research and technology to found @trendcommunity.
Read the: bit.ly/3sAsTtr
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9 Sep 2023
Sat on a panel @RareRevolutionM #RareFair!
We shared about a collaboration between @trendcommunity and @AvadelPharma to amplify the voice of those with #narcolepsy.
Honored to share the stage with Jennifer Gudeman, Maria Picone, and the incomparable @DAMMGoodSleep
#SleepPeeps
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9 Sep 2023
With issues like medical gaslighting and chronic pain, #raredisease patients face a lot of challenges to #MentalHealth. Maria Picone from @trendcommunity moderates a panel on this subject. #RareYouthFest2023 @RareRevolutionM
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28 Jul 2023
Eye exams and tests can provide diagnostic clues for many rare conditions. They may even have the potential to shorten the long diagnostic odyssey of #RareDiseases. Bob Wassman from @trendcommunity gives his #RareInsights into this edition's theme.
bit.ly/OphthalmologyRAREInsiā¦
ALT Circular portrait image of author Bob Wassman facing the camera in a smart black suit with a yellow tie. A green banner comes out the right side of the image with a text ā#RareInsights . E. Robert āBobā Wassman MD chief medical officer, TREND Community. Blue text below states āThe eyes: a window on a personās health. Above the green banner is a soundwave followed by the TREND Community logo.
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18 Jul 2023
In the rare disease field, where treatment options are limited and disease presentation can be highly variable, the regulatory space can be contentious. Check out this story with more on the subject: bit.ly/3NXOOCb #RareDisease #OrphanDrugs @trendcommunity
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6 Jun 2023
Also at #SLEEP2023 I'm seeing new ways to gather insights from data like what @trendcommunity is doing. The days of all of our data being collected from a 60 min test battery is over š„³.
Let's be innovative and learn from many different modalities.
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2 Jun 2023
Researchers from @GHLForg & @trendcommunity analyzed gout patients' social media posts to understand perceptions of proactive vs. reactive therapies. Reactive care = pain & swelling, while proactive care = flares, pain, uric acid. #EULAR2023 @dihernandezmd creakyjoints.org/eular-2023/ā¦
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23 May 2023
āDo something for yourself, do something with someone, and do something for someone else.ā - Rory Smith, living with multiple autoimmune conditions, shares his strategies for mental health. Wise words! #raredisease #WorldOrphanUSA @OrphanConf @trendcommunity
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23 May 2023
A panel of patients with multiple autoimmune conditions share about their experiences #Sjogrens #SjogrensSyndrome #autoimmunedisorder #Lupus #arthritis #WorldOrphanUSA @trendcommunity @OrphanConf
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23 May 2023
Happening now! Join the patient data seminar with @trendcommunity
@HorizonNews and @HarmonyBio. #WorldOrphanUSA
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10 May 2023
#TRENDCommunity is honored to announce the addition of Lauren Dougherty as Chief Operating Officer (COO) to our team. She brings extensive experience and we're so fortunate to have her on our #leadership team at TREND. Read her story here: bit.ly/3pqWN1U
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3 May 2023
Mental health awareness and support has grown, in part due to public figures, but mental health issues afflict millions of people. Bob Wassman from @trendcommunity provides his #RareInsights on #MentalHealth in the #RareDisease community
bit.ly/Insights-Trend-MH
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26 Apr 2023
Thank you, @trendcommunity for providing me a platform to share some thoughts and raise #FabryDisease awareness.
#PatientVoice #RareDisease #FabryDiseaseAwarenessMonth
25 Apr 2023
Continuing our awareness for #Fabry Disease, weād like to share a blog from our #TRENDsetter Sabina. She shares her journey of how misunderstood Fabry is and the frustration of obtaining a diagnosis. Read her story here: tinyurl.com/ppzyw5ec
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7 Apr 2023
We have been tracking families entering our community since the beginning of the pandemic whose COVID in pregnancy clinical course & outcomes mirror these findings.
#NeoTwitter #Pediatrics #NeuroTwitter #PatientAdvocacy #NDD #HIEawarenessmonth #COVID19
@trendcommunity
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14 Mar 2023
It's pretty incredible to see what we know observationally in anecdotal qualitative share in our global network of over 8,500 families, confirmed in evidence with sound science and research methodologies. @trendcommunity
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