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Crowdsource Your Disease & 12 More Healthful Tools

Posted by Jerry De Luca on Sunday, December 24, 2017

The ubiquity and popularity of the internet has proven to be both a curse and a blessing. While there are many dark and immoral sites across the web, there are numerous bright spots that have proven useful, helpful, and in some cases, life-saving. Below are thirteen innovative and restorative sites that offer community, education and hope for those plagued with all kinds of perplexing diseases.


“The Wisdom of Crowds -- The biggest flaw in today’s healthcare system is the expectation that one doctor has all of the answers. CrowdMed provides the solution to this. We have created one online destination that hosts a worldwide community of Medical Detectives, each with a unique set of medical knowledge, and collectively forming an incredibly well-rounded medical mind.

“Solving Cases Faster -- By giving patients access to a wide variety of medical expertise in one place, we save patients time and money by avoiding unnecessary doctor visits and treatments, getting them back to health much faster than the traditional medical system.

“Get Help Today -- Millions of people suffer from difficult medical conditions, which normally might take several months or years to diagnose. If you're reading this, you're probably already frustrated and anxious. CrowdMed can help connect your case with a world of Medical Detectives right away.”

Patients Like Me

“We've partnered with 600,000+ people living with 2800+ conditions on 1 mission: to put patients first:

“Imagine this: a world where people with chronic health conditions get together and share their experiences living with disease. Where newly diagnosed patients can improve their outcomes by connecting with and learning from others who've gone before them. Where researchers learn more about what's working, what's not, and where the gaps are, so that they can develop new and better treatments.

“It's already happening at PatientsLikeMe. We're a free website where people can share their health data to track their progress, help others, and change medicine for good.”

Find a Best Doctor™

“Best Doctors was founded on the ideal that a person’s location should not limit the quality of their care. As a result, our mission is to bring together the best medical minds in the world to get you the right diagnosis and treatment, no matter where you live. We are proud to offer a variety of services which focus on getting you the very best care—each available without the need to travel.

“The Best Doctors network includes over 50,000 of the world’s top medical experts. Each has been designated as among the best by other doctors through an exclusive, Gallup®-certified process. If you need to visit a specialist, we will search to see if any of our doctors meet your criteria and practice within a distance that works for you.”

Grand Rounds

“Want an expert second opinion? A world-class physician will provide an expert second opinion on your current diagnosis and treatment plan. No travel is required and the process is completed in a matter of days.

“Need to see a doctor in person? We’ll get you into the office of a quality-verified physician. We’ll set the appointment, forward medical records on your behalf and ensure insurance compatibility.

“Already in the hospital? We can quickly provide support and help guide your care. We’ll connect with you, your family or directly with your care team at the hospital.”

Compassionate Crowdfunding™

“How is Compassionate Crowdfunding™ different? YouCaring is a free online fundraising platform that pioneered Compassionate Crowdfunding™—empowering people worldwide to rally support for personal and charitable causes without the fundraising fees associated with other sites. To date, the YouCaring community is 5.5 million strong and has raised more than $500 million for humanitarian causes.”

Firsthand Insights into Cancer Treatments

“Developed in part with the American Cancer Society, WhatNext uses patent pending matching algorithms to connect people to highly relevant peers, firsthand experiences and American Cancer Society resources. Additionally, WhatNext gives people a way to share experiences with their illnesses using an easy to use timeline format. As a result, when people share their experiences they are catalogued and easy to find by others.”

Help For People With Rare Diseases

“Many individuals want to know about healthcare professionals or researchers who have knowledge of their conditions. When a condition is rare, it can be difficult to find someone who has seen many cases. Although there is no list of experts in rare diseases, the guidelines below include several ways to identify healthcare professionals who have experience with a particular condition. Potential resources include patient advocacy groups, researchers who have conducted or are conducting clinical trials, and authors of articles published in the medical literature.

“We are providing these resources to assist you in your search; however, sometimes it will not be possible to find a healthcare professional who has extensive experience in a particular rare condition. At the bottom of this fact sheet, we have provided some suggestions to help you when you are still unable to locate an expert after researching these resources.”

How can I find a: Healthcare professional with experience in a specific condition? Specialty treatment center? Genetics clinic? Researcher who is studying my condition? What if I can’t find an expert?

Bridging The Gap Between Rare Diseases And Research

“We are the Rare Diseases Clinical Research Network (RDCRN), an initiative of the Office of Rare Diseases Research (ORDR), NCATS. We are made up of 21 disease research groups (consortia) and a Data Management and Coordinating Center that work together improving the availability of rare disease information, treatment, clinical studies, and general awareness for both patients and the medical community. We study over 190 diseases and were the first to develop a collaborative network of investigators and patient organizations (patient advocacy groups) to support rare diseases research.”

Research Programs for People Without a Diagnosis

“If an individual’s health care providers and specialists have not been able to make a definite diagnosis so far, participating in a research study or clinical trial may be another option…..

“The Undiagnosed Diseases Network (UDN) is a research study funded by the National Institutes of Health Common Fund. The UDN is made up of clinical and research centers across the United States working to improve diagnosis and care of patients with undiagnosed diseases. Physicians and patients with additional questions may call 1-844-746-4836 (1-844-Ring-UDN).

“ClinicalTrials.gov is database that provides current information on clinical research studies. You can search ClinicalTrials.gov for research studies looking at general categories of diseases (e.g. neurological diseases or eye diseases) or specific symptoms. Some studies accept individuals without a diagnosis with the research goal of making a diagnosis.”

Evidence-Based Medicine

A 21st Century conundrum – questions there doesn’t seem to be a simple answer to: 
“Why do we use evidence every day when shopping, traveling, or buying houses but never ask for the same evidence when our doctors make a recommendation?” “Why don’t we demand evidence when other experts make important claims about our health or environment?” One doctors’ personal mission to provide a solution.

Type 1 Diabetes

“Glu is an online community of T1D Exchange, a unique nonprofit organization focused on driving faster, better research to improve outcomes in type 1 diabetes.”


“Our mission is to measurably prolong the life expectancy of humankind and help everyone Feel Good by providing immediate access to top medical experts and their trusted health advice anytime, anywhere.”

The Future of Medicine

Further Reading

How does crowdfunding work - the 7000 words insane guide [updated June 2020]  https://www.spectroomz.com/how-does-crowdfunding-work-the-definitive-guide

CrowdMed: Would you trust Internet sleuths to diagnose rare disease?  https://www.usatoday.com/story/tech/2015/11/30/crowdmed-would-you-trust-internet-sleuths-diagnose-rare-disease/76566272/

HealthTap Reaches Major Milestone In Virtual Care Expansion http://fortune.com/2016/03/29/healthtap-virtual-care-expansion/

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Photo: https://i.ytimg.com/vi/CD5X3yO8KrU/maxresdefault.jpg

Jerry De Luca is a Christian freelance writer who loves perusing dozens of interesting and informative publications. When he finds any useful info he summarizes it, taking the main points, and creates a (hopefully) helpful blog post.


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