patientworthy.com

Par projektu

Patient Worthy ir platforma, kas izveidota cilvēkiem ar retām un hroniskām slimībām. Viņu pieeja ir vienkārša: pacienti ir cilvēki, nevis tikai diagnozes. Vietne tiek uzskatīta par resursu, kas palīdz pacientiem, viņu tuviniekiem un aprūpētājiem, izmantojot izglītību, izpratni un pat humoru.

Projekta galvenais mērķis ir izveidot spēcīgu kopienu un izplatīt jaunāko medicīnisko informāciju. Viņi cenšas ne tikai dalīties ar ziņām, bet arī radīt saturu, kas patiešām ir svarīgs pacientiem. Pamatā ir ideja, ka pacienta balsij ir nozīme, tāpēc platforma aktīvi mudina dalīties ar personīgiem stāstiem.

Galvenie norādījumi

Vietnes saturs aptver plašu slimību klāstu, sākot no onkoloģijas līdz ģenētiskiem traucējumiem. Ziņu plūsmā varat atrast ziņas par sasniegumiem ārstēšanā:

• Retas slimības:Ehlers-Danlos (h-EDS) vēsture, C tipa Nīmaņa-Pika slimība, Hantingtona horeja, amiloidoze.
• Onkoloģija:Ziņas par plaušu vēža, nieru šūnu vēža un citu veidu klīniskajiem pētījumiem.
• Neiroloģija un psihiatrija:narkolepsijas vadība, toksisko materiālu ceļu izpēte smadzeņu šūnās.
• Pieredzes kopīgošana:sadaļā Kopīgojiet savu stāstu lietotāji var dalīties savā ceļojumā, piemēram, Amandas stāstā ar h-EDS vai Feju, kas dzīvo ar aptaukošanos.

Vietne sadarbojas arī ar tādiem fondiem kā Steatotic Liver Foundation (agrāk Fatty Liver Foundation) un Elephants Tea, lai publicētu to saturu. Ir atsevišķa sadaļa podkāstiem un sadaļa ar medicīnas jaunumiem, tostarp FDA apstiprinājumu jaunām zālēm, piemēram, Lynavoy holestātiskā niezes ārstēšanai.

Vietnes līdzekļi

Patient Worthy unikalitāte slēpjas tās interaktivitātē un auditorijas iesaistē. Šis nav tikai informācijas portāls, bet gan dialoga platforma.

Lietotāji var:

• pievienoties pacientu panelim. Viņi piedāvā dalību maksas aptaujās, tirgus izpētē un konsultatīvajās padomēs.
• Piesakieties savu stāstu publicēšanai, izmantojot īpašas vadlīnijas un uzvednes rakstniekiem.
• Piedalieties sadarbības saturā ar partneriem.

Mājaslapā ir sadaļa ar gaidāmajiem pasākumiem un iespēja abonēt biļetenu. Ir arī konta reģistrācijas veidlapa, kurā varat norādīt savu lomu: pacients, vecāks, aprūpētājs, draugs vai advokāts. Tas palīdz personalizēt pieredzi un labāk izprast kopienas vajadzības.

Kontaktinformācija

Tekstā ir minētas saites uz saziņas un pacienta cienīgiem bieži uzdotajiem jautājumiem, taču sniegtajā fragmentā nav norādītas konkrētas e-pasta adreses vai tālruņu numuri.Saziņai ieteicams izmantot atbilstošās izvēlnes sadaļas vai atsauksmes veidlapu pašā vietnē.

Bieži uzdotie jautājumi

• equiv: origin-trial content: A7vZI3v+Gz7JfuRolKNM4Aff6zaGuT7X0mf3wtoZTnKv6497cVMnhy03KDqX7kBz/q/iidW7srW31oQbBt4VhgoAAACUeyJvcmlnaW4iOiJodHRwczovL3d3dy5nb29nbGUuY29tOjQ0MyIsImZlYXR1cmUiOiJEaXNhYmxlVGhpcmRQYXJ0eVN0b3JhZ2VQYXJ0aXRpb25pbmczIiwiZXhwaXJ5IjoxNzU3OTgwODAwLCJpc1N1YmRvbWFpbiI6dHJ1ZSwiaXNUaGlyZFBhcnR5Ijp0cnVlfQ==
• charset: UTF-8
• name: robots content: max-image-preview:large
• name: viewport content: width=device-width, initial-scale=1
• name: generator content: WPML ver:4.6.13 stt:1,4,46,2;
• name: tec-api-version content: v1
• name: tec-api-origin content: https://patientworthy.com
• name: generator content: Elementor 3.18.3; features: e_dom_optimization, e_optimized_assets_loading, additional_custom_breakpoints, block_editor_assets_optimize, e_image_loading_optimization; settings: css_print_method-external, google_font-enabled, font_display-auto
• name: msapplication-TileImage content: https://patientworthy.com/wp-content/uploads/2024/08/cropped-PW_Social_Icon_Circle-270x270.png

• https://patientworthy.com/
• About
• Meet Our Contributors
• Meet Our Partners
• Meet the Patient Worthy Team
• Collaborative Content On Patient Worthy
• Diseases
• Submit Your Story
• Patient Worthy Content Submission Guidelines
• Patient Worthy Writing Prompts
• Click Here to Read Real Stories From Patients And Caregivers
• Library
• Events
• Patient Worthy FAQs
• https://patientworthy.com/podcasts/
• Submit a Story
• Join PW
• https://patientworthy.com/2026/03/31/lynavoy-achieves-fda-approval-a-breakthrough-treatment-for-cholestatic-pruritus-in-primary-biliary-cholangitis/
• Primary Biliary Cholangitis
• https://patientworthy.com/2026/03/30/choosing-to-be-me-redefining-my-life-with-rheumatic-heart-disease/
• Heart disease
• https://patientworthy.com/2026/03/30/major-breakthrough-discovery-of-a-pathway-that-allows-brain-cells-to-move-toxic-material-in-huntingtons-disease/
• Huntington's disease
• https://patientworthy.com/2026/03/30/lupin-receives-fda-approval-for-pitolisant-a-novel-solution-for-narcolepsy-management/
• Narcolepsy
• Read More »
• Read More »
• Read More »
• Read More »
• Read More »
• Read More »
• Read More »
• Read More »
• Read More »
• Read More »
• Read More »
• Read More »
• Read More »
• Read More »
• Read More »
• Read More »
• Read More »
• Read More »
• https://patientworthy.com/page/2/
• https://patientworthy.com/page/3/
• https://patientworthy.com/page/4/
• https://patientworthy.com/2026/01/20/finding-strength-together-scott-and-katies-journey-with-advanced-kidney-cancer/
• https://patientworthy.com/2025/11/04/you-are-not-alone-empowering-the-advanced-kidney-cancer-community/
• https://patientworthy.com/2025/08/22/finding-light-through-story-the-power-of-ambassadorship-in-the-endometrial-cancer-community/
• Read Full Story Here
• http://patientworthy.com/#
• http://patientworthy.com/mailto:?subject=Facebook&body=https%3A%2F%2Fwww.facebook.com%2F1655056738050804_1531730335628618%20-%20%0A%09For%20some%20people%20living%20with%20rare%20diseases%2C%20weight%20loss%20and%20weakness%20aren%E2%80%99t%20simply%20about%20nutrition%20or%20appetite.%20Underlying%20illnesses%20can%20change%20how%20the%20body%20uses%20energy%20and%20muscle%2C%20leading%20to%20significant%20physical%20decline%20over%20time.%20Raising%20awareness%20about%20these%20complications%20helps%20highlight%20the%20serious%20ways%20certain%20diseases%20affect%20the%20body%20and%20why%20comprehensive%20care%20and%20research%20are%20so%20important.%20%23RareWordOfTheWeek%20%23RareDisease%20%23RareDiseaseAwareness%20%23PatientWorthy%20%09%0A%09
• http://patientworthy.com/javaScript:void(0);
• http://patientworthy.com/mailto:?subject=Facebook&body=https%3A%2F%2Fwww.facebook.com%2F1655056738050804_1531730262295292%20-%20%0A%09For%20some%20people%20living%20with%20rare%20diseases%2C%20weight%20loss%20and%20weakness%20aren%E2%80%99t%20simply%20about%20nutrition%20or%20appetite.%20Underlying%20illnesses%20can%20change%20how%20the%20body%20uses%20energy%20and%20muscle%2C%20leading%20to%20significant%20physical%20decline%20over%20time.%20Raising%20awareness%20about%20these%20complications%20helps%20highlight%20the%20serious%20ways%20certain%20diseases%20affect%20the%20body%20and%20why%20comprehensive%20care%20and%20research%20are%20so%20important.%20%23RareWordOfTheWeek%20%23RareDisease%20%23RareDiseaseAwareness%20%23PatientWorthy%20%09%0A%09
• https://www.linkedin.com/shareArticle?mini=true&url=https%3A%2F%2Fwww.facebook.com%2F1655056738050804_1531619552306363&title=%09Throughout%20the%20week%2C%20Patient%20Worthy%20is%20highlighting%20narcolepsy%20with%20educational%20content%20aimed%20at%20raising%20awareness%20and%20fostering%20greater%20understanding%20in%20our%20community.We%E2%80%99ll%20be%20sharing%20information%20on%20our%20socials%20and%20patientworthy.com%20to%20educate%2C%20empower%2C%20and%20support%20those%20affected%20by%20this%20condition.Have%20a%20story%20you%E2%80%99d%20like%20to%20share%3F%20Your%20voice%20matters%21%20Join%20the%20conversation%20by%20clicking%20the%20link%20in%20our%20bio.%23Narcolepsy%20%23NarcolepsyAwareness%20%23PatientWorthy%20%23ShareYourStory%20%09%09
• http://patientworthy.com/mailto:?subject=Facebook&body=https%3A%2F%2Fwww.facebook.com%2F1655056738050804_1531619552306363%20-%20%0A%09Throughout%20the%20week%2C%20Patient%20Worthy%20is%20highlighting%20narcolepsy%20with%20educational%20content%20aimed%20at%20raising%20awareness%20and%20fostering%20greater%20understanding%20in%20our%20community.We%E2%80%99ll%20be%20sharing%20information%20on%20our%20socials%20and%20patientworthy.com%20to%20educate%2C%20empower%2C%20and%20support%20those%20affected%20by%20this%20condition.Have%20a%20story%20you%E2%80%99d%20like%20to%20share%3F%20Your%20voice%20matters%21%20Join%20the%20conversation%20by%20clicking%20the%20link%20in%20our%20bio.%23Narcolepsy%20%23NarcolepsyAwareness%20%23PatientWorthy%20%23ShareYourStory%20%09%0A%09
• http://patientworthy.com/javascript:void(0);
• Privacy Notice
• Privacy Policy for CA Residents
• EU/UK Privacy Notice
• Data Privacy Framework: Consumer Privacy Policy
• Consumer Health Data Privacy Policy
• Cookie Notice
• More Info
• Visit Home Page
• http://patientworthy.com/

• Click Here To Share Your Story With MASH
• https://patientworthy.wpengine.com/2021/06/16/rare-trials-essential-solutions-congenital-adrenal-hyperplasia/
• Subscribe to Our Newsletter
• https://www.instagram.com/patientworthy/
• https://www.instagram.com/p/DWh6ynXDby3/
• https://www.instagram.com/p/DWhe321iSlL/
• https://www.instagram.com/p/DWhOZBoFIfM/
• https://www.instagram.com/reel/DWhErITgNkH/
• https://www.instagram.com/p/DWhCX1wETP5/
• https://www.instagram.com/p/DWgntSnlGLd/
• https://www.instagram.com/p/DWfGsg5GpT8/
• https://www.instagram.com/p/DWbZxs7DZMP/
• https://www.instagram.com/p/DWZ5C4dD3zY/
• https://www.tiktok.com/@patientworthyrarenews
• FOLLOW US ON FACEBOOK
• https://facebook.com/1655056738050804
• #
• View on Facebook
• https://www.facebook.com/sharer/sharer.php?u=https%3A%2F%2Fwww.facebook.com%2F1655056738050804_1531730335628618
• https://twitter.com/intent/tweet?text=https%3A%2F%2Fwww.facebook.com%2F1655056738050804_1531730335628618
• https://www.linkedin.com/shareArticle?mini=true&url=https%3A%2F%2Fwww.facebook.com%2F1655056738050804_1531730335628618&title=%09For%20some%20people%20living%20with%20rare%20diseases%2C%20weight%20loss%20and%20weakness%20aren%E2%80%99t%20simply%20about%20nutrition%20or%20appetite.%20Underlying%20illnesses%20can%20change%20how%20the%20body%20uses%20energy%20and%20muscle%2C%20leading%20to%20significant%20physical%20decline%20over%20time.%20Raising%20awareness%20about%20these%20complications%20helps%20highlight%20the%20serious%20ways%20certain%20diseases%20affect%20the%20body%20and%20why%20comprehensive%20care%20and%20research%20are%20so%20important.%20%23RareWordOfTheWeek%20%23RareDisease%20%23RareDiseaseAwareness%20%23PatientWorthy%20%09%09
• View on Facebook
• https://www.facebook.com/sharer/sharer.php?u=https%3A%2F%2Fwww.facebook.com%2F1655056738050804_1531730262295292
• https://twitter.com/intent/tweet?text=https%3A%2F%2Fwww.facebook.com%2F1655056738050804_1531730262295292
• https://www.linkedin.com/shareArticle?mini=true&url=https%3A%2F%2Fwww.facebook.com%2F1655056738050804_1531730262295292&title=%09For%20some%20people%20living%20with%20rare%20diseases%2C%20weight%20loss%20and%20weakness%20aren%E2%80%99t%20simply%20about%20nutrition%20or%20appetite.%20Underlying%20illnesses%20can%20change%20how%20the%20body%20uses%20energy%20and%20muscle%2C%20leading%20to%20significant%20physical%20decline%20over%20time.%20Raising%20awareness%20about%20these%20complications%20helps%20highlight%20the%20serious%20ways%20certain%20diseases%20affect%20the%20body%20and%20why%20comprehensive%20care%20and%20research%20are%20so%20important.%20%23RareWordOfTheWeek%20%23RareDisease%20%23RareDiseaseAwareness%20%23PatientWorthy%20%09%09
• View on Facebook
• https://www.facebook.com/sharer/sharer.php?u=https%3A%2F%2Fwww.facebook.com%2F1655056738050804_1531619552306363
• https://twitter.com/intent/tweet?text=https%3A%2F%2Fwww.facebook.com%2F1655056738050804_1531619552306363
• Partner With Us
• Check Out Rare Events
• Get Inspired By Our Memes
• About Us
• Rare Diseases and Conditions
• Terms of Use
• http://www.facebook.com/patientworthy/
• http://www.twitter.com/patientworthy/
• http://www.instagram.com/patientworthy/
• https://waithowdoyouspellthatraredisease.podbean.com/
• https://www.youtube.com/channel/UC3PsoCLzLXOfue4BGcol7Fg
• http://www.linkedin.com/company/patient-worthy
• http://www.pinterest.com/patientworthy/
• https://patientworthy.us11.list-manage.com/subscribe?u=6552e0c5e85426d696c60fd3c&id=e5d47283af

            Domain Name: PATIENTWORTHY.COM
Registrar: CSC Corporate Domains, Inc.
Domain Status: client transfer prohibited
Creation Date: 2015-03-26T20:40:57Z
Registry Expiry Date: 2027-03-26T20:40:57Z
Updated Date: 2026-03-22T05:12:55Z
Name Server: PDNS82.ULTRADNS.BIZ
Name Server: PDNS82.ULTRADNS.COM
Name Server: PDNS82.ULTRADNS.NET
Name Server: PDNS82.ULTRADNS.ORG
REGISTRAR Contact: CSC Corporate Domains, Inc.
>>> Last update of RDAP database: 2026-08-01T06:22:09Z         

			User-agent:  *
Crawl-delay:  10
        

Tehniskais SEO

SEO lapā

Saturs un UX