Cushing's Support & Research Foundation @CSRFnet
Supporting patients in all ways; direct peer contact, trustworthy science-supported resources, community events, access to patient voice research opportunities. csrf.net Worldwide; Homebase Atlanta GA Joined October 2014-
Tweets104
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Followers371
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Following37
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Likes4
New post on CSRF: Sandra M. - Embrace the Journey csrf.net/patient-storie…
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New post on CSRF: Lauren I. csrf.net/patient-storie…
New post on CSRF: CSRF Interviews One of Its First Members: Neddy Zaleski csrf.net/patient-storie…
New post on CSRF: Bridget H. csrf.net/patient-storie…
New post on CSRF: Cushing's and Blood Sugar - What's the Connection? csrf.net/doctors-articl…
New post on CSRF: Doctors' Answers csrf.net/doctors-answer…
New post on CSRF: Three Takes on the COVID-19 Pandemic csrf.net/coping-with-cu…
New post on CSRF: Medications for Cushing's - Old and New: Part One in a Two-Part Series csrf.net/coping-with-cu…
A breakdown of the new Medicare law, by our partner @PAN_Foundation panfoundation.org/pan-foundation…
We feel seen! Sharon Terry of Genetic Alliance goes hard for rare patients everywhere and makes the ENTIRE case for registries led by patient organizations. forbes.com/sites/ashoka/2…
We are relieved and encouraged when we see efforts like this to educate and connect people to how Cushing's affects everything and everyone in our lives far beyond the clinical data captured in the office setting. @MedStoriesTV medicalstories.tv/title/cushings…
Great information for patients facing transsphenoidal surgery by Drs. Raj Mukherjee and Nick Rowan (Johns Hopkins) youtu.be/rIzWWLJ-B7g
In honor of Cushing's Awareness Day, a patient video from Recordati Rare Diseases. youtu.be/vKGvwLG9KI4
Today is Cushing's Awareness Day! Hug a Cushie, and help us work toward faster diagnosis, better prognosis, and kinder understanding.
New post on CSRF: Michelle B zpr.io/Wg3pJtQYBKhw
New post on CSRF: Kate W zpr.io/zbPL4F3LzrZ4
New post on CSRF: Amanda P zpr.io/XYrYAzpUiYjE
New post on CSRF: Joanna zpr.io/F8FqDJFdyBFk
New post on CSRF: Tina L zpr.io/4VgFChhHgYjN
New post on CSRF: Jaci H. zpr.io/t2BJqDv7pLYQ
The Pituitary Foundat... @Pituitary_org
8K Followers 5K Following Supporting anyone affected by pituitary conditions through helplines, support groups, and events. Join #TeamPituitary to raise essential funds
National Organization... @RareDiseases
40K Followers 3K Following #NORD has been the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay. On Bluesky at @ https://t.co/D7PIT4k0Py
DrJFM - Juan C. Ferna... @drjfm_stanford
6K Followers 367 Following Stanford Professor of Neurosurgery. Brain/SkullBase/Pituitary Surgery. Surgical Innovation, Translational Neuroanatomy. Proud Spaniard & Made American.
Marta Araujo-Castro, ... @Marta_Araujo_C
3K Followers 1K Following Endocrinologist at the Ramón y Cajal Hospital, Madrid. Spain. Coordinator of the Pituitary & Adrenal Unit. I'm focus on pituitary and adrenal diseases.
Dr. Maria Fleseriu @MariaFleseriu
2K Followers 312 Following Professor, Medicine & Neurosurgery, Director Pituitary Center, OHSU @ohsunews, Board of Directors @TheEndoSociety, Past President @PituitarySoc. Tweets my own
Ahmed Mohyeldin MD Ph... @MohyeldinAhmed
2K Followers 2K Following Assistant Professor | Co-Director of the Endoscopic Skull Base Program and Pituitary Center|Chao Cancer Center @UCIrvinehealth @UCINeurosurgery @TheMohyeldinLab
The Lancet Diabetes &... @TheLancetEndo
52K Followers 2K Following Your leading source of international, cutting-edge research, review, and opinion in clinical diabetes and endocrinology. IF=41·8.
Prashant Yadav @Prashantydv_26
88 Followers 595 Following Post-doc research fellow @Hopkinsmedicine #Traveling new places #Trekking Mountains. Love listening #Music and playing #Guitar 🏌️
あやこ @irodoriko4_10
131 Followers 128 Following ➡️中高、少林寺拳法部で精神力鍛えたつもりが生粋のビビり➡️大学、夜景を見ながらイノシシに追いかけられる➡️就職、鉄道運転系➡️結婚、式で疲れ果てる➡️21 July, 2022 - accompany to Botswana👉NOW 🏥24年クッシング症候群発覚（2025.6.3左副腎＋3腫瘍摘出）
Marilie Randewijk @Marilie_R
3 Followers 59 Following
Rare & Ready: A Genet... @rare_ready
252 Followers 182 Following Activating on policies that limit access. Supported by Acadia, BioMarin, CSL Behring, Sanofi, & Ultragenyx. Social media guidelines https://t.co/6ZYhchAmHS
Hanna Algattas, MD @HannaAlgattasMD
407 Followers 233 Following #Neurosurgeon @UB_neurosurgery | Trained at @PittNeurosurg | Open & Endoscopic #SkullBase + #SportsMedicine #Neurosurgery | Sharing insights along the way.
Matei Banu @MateiBanu
633 Followers 1K Following Skull base fellow @StanfordNsurg. Fellowship @MDAndersonNews. Residency @nyphospital/@Columbia University Medical Center/@ColumbiaNeuro. Brain tumor researcher
Brett Youngerman, MD @YoungermanMD
248 Followers 132 Following Neurosurgeon at @ColumbiaNeuro, @ColumbiaMed, and @NYPHospital
oisín 🍉 @darIingtonia
77 Followers 273 Following shay, they/he, fka deerpuppys. i love idols and misc obscure emo bands. tweets about yuri occasionally. 💕 @wizardamphibian 🐊
Andi Celestin @andicelestin
19 Followers 378 Following
Gillian Sapia RN @GillianHSapia
2K Followers 4K Following Rare Disease mom. Legislative Advocate and Activist. Opinions expressed are MY OWN and do not reflect the views of any organization, employer, or other entity.
Ira @Lilira2021
104 Followers 551 Following
Stephane Gonzalez @Steph_Gonz_
13 Followers 7 Following
Leila Belkora Ph.D. a... @LeilaBelkora
855 Followers 2K Following Science writer. Roots in 🇺🇸🇲🇦🇨🇭. She/her. Book on poet Robert Frost as amateur astronomer coming from Clemson University Press. Agent: Henry Thayer.
Ben Forred @ZebraSites
52 Followers 264 Following I make and manage awesome websites for #raredisease advocacy organizations. Husband, father, rare disease patient/researcher, web designer 🤓
kierabellarosalind fo... @kierabella97771
0 Followers 18 Following Kiera Bella Rosalind Foundation is working in the field of rural development & social welfare in the slum of urban and backward of rural areas
RA @Rana713141
25 Followers 2K Following
Pamela Raymond @PamelaRRaymond
2 Followers 1K Following
World Orphan Drug Con... @OrphanConf
5K Followers 869 Following Get regular updates on #WorldOrphanUSA! June 9-11, 2026 | Boston Convention & Exhibition Center
MD.Atik Hasan @atikhasan200
23 Followers 447 Following 👉I'm a Digital Marketing Expert ⭐Facebook Marketing ⭐YouTube Marketing ⭐SEO Marketing ⭐Instagram Marketing ⭐SMM Marketing Specialist
Angela @gimmeajingle
75 Followers 194 Following
Gray @LegatoRoshambo
276 Followers 2K Following let ‘paper’ start the fire, that you sit and tell stories around 🔥
TheSmuckum @Alexx69Holman_
5 Followers 120 Following Pansexual, them/they, Cartoonist/illustrator,cancer patient since 2022, Cushing syndrome
Victoria Regina @VictoriRegina11
236 Followers 2K Following
Sleetesl @sleetesl13124
8 Followers 1K Following Leave your eyes to the scenery and your weight to the delicious food.
Tracy Dixon-Salazar @TracyDixonSalaz
3K Followers 934 Following Mom. Rare Disease & LGS Advocate. Neuroscientist. The largest most neglected healthcare resource, worldwide, is the patient. Executive Director @LGS_Foundation
Amanda Potts @AmandaPotts
83 Followers 846 Following Neurology PA-C @middlesexCT dog mom, nature and hiking enthusiast, fitness, avid reader + concertgoer, former dancer living with persistent Cushing's Disease
Rising Phoenix ⚖ @leesa_rhae
110 Followers 1K Following I'm a liberalistic, conservative, country, hippie, metal head....I tend to offend
kat0318 @katotr87
2 Followers 26 Following
Mehmet Yiğit @Yigit_MD
68 Followers 431 Following Ege University FoM, Department of Internal Medicine 2017-2022 Ege University FoM, Department of Endocrinology and Metabolism 2023-
Trey Summitt @Trey_Summitt
171 Followers 773 Following Father of three. Really blessed, and interested in almost everything.
Joachim Starup-Hansen @starupjoachim
730 Followers 2K Following Neurosurgery Trainee (ST1) | London Deanery (@QSNeurosurgery) | Robotics, AI | | @WEISS_UCL | @teq_neurosurg 🧠 🤖
Michael Weintraub, MD @MWeintraubMD
5K Followers 835 Following Endocrinologist & Clin. Asst. Prof. @NYULangone | @WeillCornell and @Sloan_Kettering endocrine fellow alum. ABOM Diplomate. Opinions = own
Natalija Antic @Ljiljino_cedo
137 Followers 463 Following M.D. | Internal Medicine Resident @ Clinic for Endocrinology, Diabetes, and Metabolic Diseases University Clinical Centre of Serbia
European Society of E... @ESEndocrinology
15K Followers 428 Following The European Society of Endocrinology, the voice for endocrinology. At the centre of Europe's endocrine community.
NIHR Involvement @NIHRinvolvement
18K Followers 596 Following We share learning, events and advice from @NIHRresearch on engaging patients, service users, carers and the public in health and care research
Richie @RichieDNYC
284 Followers 333 Following I have a license to sell hair tonic to bald eagles in Omaha, NE
Lou @Lourdesflog
2K Followers 3K Following Nada. Entre más conozco menos sé. #Endocrinóloga #LaAntiguaGuatemala
Rashi Sandooja @RSandooja
203 Followers 137 Following Fellow @Mayoclinic, Endocrinologist in making. Pituitary adrenal enthusiast. Coffee, Food, Books and Dance. From 🇮🇳 now here; she/her
Beacon for Rare Disea... @RareBeacon
12K Followers 10K Following Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
Daringtoliv3 🐈🐈... @daringtoliv3
17 Followers 60 Following Survived 3 life threatening conditions - I dare to live ! I am like a 🐈 Learning my ABCs -Addison’s Disease, Blood Cancer & Cushing Syndrome - Expert Patient.
Marianne @MarianneLombar4
206 Followers 617 Following
Alyssa Shlensky Shapi... @maestrashlensky
377 Followers 709 Following
Endocrine Society @TheEndoSociety
32K Followers 3K Following We unite, lead, and grow the global endocrine community to accelerate scientific breakthroughs and improve health worldwide. @endocrinesociety.bsky.social
Theodore Schwartz MD @TedSchwartz13
5K Followers 629 Following #Neurosurgeon specializing in minimally invasive approaches for #braintumor, #pituitarytumor and #epilepsy surgery in NYC.
National Organization... @RareDiseases
40K Followers 3K Following #NORD has been the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay. On Bluesky at @ https://t.co/D7PIT4k0Py
DrJFM - Juan C. Ferna... @drjfm_stanford
6K Followers 367 Following Stanford Professor of Neurosurgery. Brain/SkullBase/Pituitary Surgery. Surgical Innovation, Translational Neuroanatomy. Proud Spaniard & Made American.
Dr. Maria Fleseriu @MariaFleseriu
2K Followers 312 Following Professor, Medicine & Neurosurgery, Director Pituitary Center, OHSU @ohsunews, Board of Directors @TheEndoSociety, Past President @PituitarySoc. Tweets my own
PAN Foundation @PAN_Foundation
4K Followers 571 Following Our X account is no longer active, but we encourage you to follow us on BlueSky, Instagram, Facebook, & LinkedIn to stay up-to-date on PAN news and resources.
Genetic Alliance @GeneticAlliance
23K Followers 2K Following A non-profit network transforming health through genetics. 🧬 We promote openness in health systems, advocacy, empowerment, informed decisions, and access.
Emory Neurosurgery @EmoryNeurosurg
5K Followers 1K Following Official Twitter account for the Department of Neurosurgery @EmoryMedicine. Excellence in patient care, education, and research.
BarrowNeurological @BarrowNeuro
17K Followers 634 Following Minding What Matters Most® | Preserving thoughts, memories, dreams, personalities, and movement. Contact us: [email protected]
Constantine Stratakis @ConstantineStr7
154 Followers 18 Following Senior Investigator at The National Institutes of Health https://t.co/4DSfkVaMwr
Lynnette Nieman @lynnette_nieman
117 Followers 7 Following
Deb St. Pierre @debstpierre
23 Followers 63 Following Family; #roadbiking; #MTB; #AustralianShepherds; #CushingsDisease; #Patientadvocate #Raredisease#AdultGrowthHormoneDeficency#Hypopituitarism
Debbie Drell @DebbieDrell
685 Followers 580 Following Director of Membership at the National Organization for Rare Disorders. My sister @flippymomof3 has pulmonary hypertension (rare pulmonary disease, dx 1998).
Recordati Rare Diseas... @RecordatiD
671 Followers 108 Following At Recordati Rare Diseases, we focus on the few - those affected by rare diseases. Social media guidelines: https://t.co/PEjh3QzOIW
Corcept Therapeutics @Corcept
249 Followers 7 Following
Michael P Catalino @mpcatalino
298 Followers 175 Following Devoted husband and father. Neurosurgical oncologist and pituitary surgeon at the University of Virginia. Views my own.
Eliza B Geer @EBGeerMD
229 Followers 302 Following
Isabel Paterson @izz_uh_bell
108 Followers 165 Following Sometimes I think of things that are too dumb to post on Facebook.
Amy Dahm @amydahm
381 Followers 1K Following Truman Security Fellow, Ret. US diplomat, Policy Advisor, Human Rights Advocate, Rare Disease 🦓, Wharton Grad, Dog Lover, Foodie, Genealogy Buff, Wanderluster
Elissa Kline @ElissaKline
278 Followers 308 Following Product @ Point. Formerly Zillow, Quinstreet, Amazon, WSJ. Tuck MBA
AIUnited @AI_United
514 Followers 51 Following Adrenal Insufficiency United is a group of dedicated family members and affected adults. ** thanks for following - we'll tweet more soon
The National Adrenal ... @NADF_Adrenal
721 Followers 24 Following The National Adrenal Diseases Foundation informs, educates, and supports those with adrenal disease and their families to improve their quality of life.
Pituitary World News @PituitaryWNews
959 Followers 169 Following
Pituitary Network @pituitaryorg
2K Followers 574 Following The PNA, founded in 1992, is the world's largest nonprofit patient advocacy organization devoted to early diagnosis, treatment and cure for pituitary diseases.
Acromegaly Community @AcroCommunity
1K Followers 1K Following Please visit our website at https://t.co/T0gLxcf98w. Membership, info & support always free!
WAPO @WAPO_org
463 Followers 397 Following WAPʘ is a non-profit organization created in order to unite the international pituitary patient community
Pituitary Society @PituitarySoc
3K Followers 109 Following Raising pituitary diseases awareness. RTs, shares, likes NOT endorsement! Cannot offer direct patients' medical advice, patients should consult their providers
ISE @isendo
4K Followers 458 Following The International Society of Endocrinology. We promote international cooperation & #scientific exchange, integrating all areas of #endocrinology and #metabolism
OHSU Brain Institute @OHSUBrain
6K Followers 915 Following The OHSU Brain Institute is among the top institutions in the nation for NIH-funded neuroscience research. #OHSUBrain #OHSUResearch
Louise pace @CushpacePace
6 Followers 4 Following
Mayo Clinic @MayoClinic
2.0M Followers 2K Following An integrated clinical practice, education and research institution specializing in treating patients. Account maintained by @MayoClinic.
NIH @NIH
1.7M Followers 229 Following Official account of the National Institutes of Health. NIH...Turning Discovery Into Health®. Privacy Policy: https://t.co/wOGwZ3gX1M Engagement ≠ endorsement
EURORDIS-Rare Disease... @eurordis
32K Followers 1K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Global Genes @GlobalGenes
29K Followers 6K Following Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. #CareAboutRare
World Health Organiza... @WHO
12.1M Followers 2K Following We are the UN’s health agency - #HealthForAll. Always check our latest tweets for updated advice/information. We will respond to mis-and-disinformation.
AMA @AmerMedicalAssn
725K Followers 7K Following Physicians' powerful ally in patient care. RT does not equal endorsement. #FightingForDocs | AMA president: @PresAmerMedTrends for United States
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