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Who is rare patient voice?

Wes Michael, President and Founder of Rare Patient Voice, has been involved in rare and orphan diseases since 1998, interviewing and surveying patients, caregivers, physicians, nurses and advocacy leaders. Wes has more than 35 years experience in marketing research, and more than 20 years in healthcare marketing research.

How does rare patient voice rank on the Inc 5000 list?

For the Second Time, Rare Patient Voice Ranks on the Inc. 5000, Ranking #3981 With Three-Year Revenue Growth of 122% Inc. Magazine Reveals Annual List of America’s Fastest-Growing Private Companies … READ MORE Need to raise funds for your org’s efforts?

How secure is patient access?

Your details and information are protected by the highest standards of online security, so all you need to worry about is what to do with the spare time you've earnt. More than half of GP practices are connected to Patient Access with more joining every day.

What happens when you join Rare Patient Voice?

When you join Rare Patient Voice, you may be invited to participate in interviews, surveys, or online communities where you will share your insights.

Who knows better than you about your journey and experiences?

Who knows better than you about your journey and experiences? We hear from patients all of the time about their unique experiences. Only you know what you have gone through and what you need! Sharing your voice can help you as well as those coming after you. The patient voice needs to be heard so that companies develop products and services that have a meaningful impact on patients’ lives. We connect you with researchers who are developing these products and services. Your voice can help you and others with your condition.

What is rare patient voice?from rarepatientvoice.com

Rare Patient Voice, LLC provides patients and caregivers with rare diseases an opportunity to voice their opinions through surveys and interviews to improve medical products and services.

What happens when you join Rare Patient Voice?from rarepatientvoice.com

When you join Rare Patient Voice, you may be invited to participate in interviews, surveys, or online communities where you will share your insights.

Why Should You Participate?

The surveys you will take in the RARE-X Data Collection Program are critical to the drug and treatment development process. Our goal is to make the process as easy as possible for you. The RARE-X Data Collection Program uses a collaborative technology platform powered by RARE-X.

How it Works

Patients and Caregivers retain full control over who has access to patients’ health information

What is Rare X?

RARE-X provides the support, technology, tools, and resources necessary for successful data collection, and secure but open data sharing, on a global scale.

What is the purpose of Rare X?

The goal of RARE-X is to make the important task of data collection free, accessible and easy for rare disease communities (and patient advocates like you), while ensuring that the data you collect is as useful and shareable as possible for researchers and others working on treatments and cures.

Why is it important to collect patient data?

Data from each patient’s medical history, genome, and other sources are critical to disease understanding, diagnosis, treatment, and the development of future medicines and cures. This is why it is so important for patients and caregivers to be able to easily collect, access and share their data with doctors, researchers or drug developers to fuel progress within and across rare diseases.

Why should patients own their data?

Patients should own their data and be supported to do it properly and easily. Data Collection should be systematized to help support large scale global harmonization and usage. Opening up data (where possible), will level the playing field – creating more opportunities for discovery.

Can progress be made if data can't be seen?

Progress will never be made if your data can’t be seen or analyzed by doctors, researchers or drug developers who can use it to get to a faster diagnosis, or to better understand your disease and how to potentially treat or cure it. .