patientworthy.com
RegisteredAbout the projectPatient Worthy is a platform created for people with rare and chronic diseases. Their approach is simple: patients are people, not just diagnoses. The site bills itself ...
patientworthy.com Website screenshot
Website Description
About the project
Patient Worthy is a platform created for people with rare and chronic diseases. Their approach is simple: patients are people, not just diagnoses. The site bills itself as a resource that helps patients, their loved ones and caregivers through education, awareness and even humor.
The main goal of the project is to create a strong community and disseminate up-to-date medical information. They strive to not only share news, but also produce content that truly matters to patients. At the core is the idea that the patient's voice matters, so the platform actively encourages the sharing of personal stories.
Main directions
The content on the site covers a wide range of diseases, from oncology to genetic disorders. In the news feed you can find messages about breakthroughs in treatment:
- Rare diseases:History of Ehlers-Danlos (h-EDS), Niemann-Pick disease type C, Huntington's chorea, amyloidosis.
- Oncology:News on clinical trials for lung cancer, renal cell cancer and other types.
- Neurology and psychiatry:Management of narcolepsy, research into the pathways of toxic materials in brain cells.
- Sharing Experiences:The Share Your Story section allows users to share their journey, such as Amanda's story with h-EDS or Faye living with obesity.
The site also partners with foundations such as the Steatotic Liver Foundation (formerly Fatty Liver Foundation) and Elephants Tea to publish their content. There is a separate section for podcasts and a section with medical news, including FDA approval of new drugs such as Lynavoy for the treatment of cholestatic pruritus.
Site Features
The uniqueness of Patient Worthy lies in its interactivity and audience involvement. This is not just an information portal, but a platform for dialogue.
Users can:
- Join the Patient Panel. They offer participation in paid surveys, market research and advisory boards.
- Apply for publication of your stories through special guidelines and prompts for writers.
- Participate in collaborative content with partners.
The website has a section with upcoming events and the ability to subscribe to the newsletter. There is also an account registration form where you can indicate your role: patient, parent, caregiver, friend or lawyer. This helps personalize the experience and better understand the needs of the community.
Contact Information
The text mentions links to the Contact and Patient Worthy FAQs, but there are no specific email addresses or phone numbers in the snippet provided.For communication, it is recommended to use the appropriate sections of the menu or the feedback form on the site itself.
FAQ
Frequently Asked Questions
How can I share my story?
The site has specific Content Submission Guidelines and prompts for writing. You can click the Submit Your Story or Share Your Story button to begin the process of publishing your experience.
Can you make money by participating in the project?
Yes, Patient Worthy offers to join their Patient Panel. Participants are paid to participate in surveys, market research, and advisory boards.
What topics does the site cover?
The main focus is rare and chronic diseases. Content includes news about clinical trials, FDA approvals, personal patient stories, and educational materials on diseases such as narcolepsy, Huntington's disease, Ehlers-Danlos disease, and others.
Who can become part of the community?
The project is aimed at patients, parents, caregivers, friends, advocates and healthcare professionals. When you register, you can choose one or more roles that best describe your passion for rare diseases.
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Whois Information
Whois Raw Data
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
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