Note: This is the first in a series of posts on resources for patients and caregivers. If you or someone you care for is coping with a chronic condition, you don’t always have time to research and find the best resources to help with your specific challenges. We’ll do the research for you, and highlight the best of what we find here in our blog.
Whether you’re a caregiver or a patient, many online resources are available for support and information. Some of the health information you find on these sites may be the opinion or experience of just one person, so it’s important to discuss it with your doctor if you think a particular treatment might be right for you. With that one caveat in mind, I think you’ll find the support and the “voice of experience” at these sites very helpful.
PatientsLikeMe.com • Patients and caregivers join communities based on specific health conditions, benefit from social support & provide input on the challenges & successes of various treatments. The site was designed as a platform for patients to share and learn from real-world, outcome-based health data. They also developed data-sharing partnerships with nonprofit, research and industry partners who use the information to improve products, services and care for patients. As a patient or caregiver, the site may be a useful place for you to research a new condition, or a new treatment you’re considering. You can hear directly from people who’ve tried a particular treatment; what to expect, how well it worked, how fast it worked, problems encountered, how they coped and more.
Self-Help Group Sourcebook Online • A comprehensive directory & search function for finding a support group for a specific health condition. They cover all kinds of support groups; online and in person, for physical and mental health conditions, addictions, bereavement, disabilities, parenting, and caregiver concerns.
More Online Support Sites • All the sites below have multiple support groups for various health conditions, helping you share support and information through message boards & forums. Most also have groups specifically for caregivers. Some have other useful features like health information, links to in-person support groups, directories of doctors and other health practitioners & clinical trial info.
| • Inspire.com | • DailyStrength.org |
| • HealthBoards.com | • Wellsphere.com |
| • SupportGroups.com | • MDJunction.com |
We need your input and comments . . . What are the most helpful resources you’ve found online, or in your community? What types of resources would you like to see us cover for future articles in this series? What other topics should we cover in our blog?
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I like the idea of this blog site and look forward to additional information from AccuPax that will assist me with some of my very important medical and pharmaceutical decisions. Ron, thanks for sharing your knowledgeable resources and encouraging discussion on healthcare on your website.
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