_{Join Rare Patient Voice – Voice your opinions and get paid}

Earlier this year I had a great conversation with Wes Michael and Debi Christ from Rare Patient Voice. The conversation was centred around FibroFlutters becoming partners with Rare Patient Voice. They were previously just operating within the US, but expressed that they were expanding to include other areas. With this in mind, and us being based in the UK, would we consider being part of their referral program. As a result, our readers have the opportunity to voice their opinions and get paid.

Do you reside in the UK? Voice your opinions so companies can develop better products and services.

Wes and Debi told me that Rare Patient Voice also cater for ‘non-rare diseases’ so you do not need to have a rare disease. If you have a chronic illness you can still sign up!

Here at Flutters we encourage our followers to get involved in research because it helps create better treatments and therapies.

We are passionate about improving patient engagement and feel that this referral program does help with that. Not only that, you are not being taking advantage of because you will be paid for your time… and the data that you provide!

For disclosure purposes: FibroFlutters are remunerated for everyone who signs up with ‘Rare Patient Voice’ via our link below. All monies received go towards paying for the running costs of this website.

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@rarepatientvoic connects #patients and #caregivers with confidential #researchstudies and surveys. Voice your opinions and help companies develop better products / services and provide better #healthcare for patients. #ShareYourStory

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_{Get paid for your opinion}

Rare Patient Voice connects patients and family caregivers with confidential research studies and surveys. Their studies and surveys are opinion based and are all about the patients and caregivers experience to help improve treatments, products, and services.

Your information is kept confidential, and never sold or shared. You will be invited to participate in surveys and interviews, where you will earn cash rewards. We pay participants on a $100 an hour pay scale.

Get paid to Voice your opinions. Help companies develop better products and services to help provide better healthcare for patients.

Create better patient outcomes!

Improve patients lives with a better quality of life.

Voice your opinion so that chronic illness & rare disease patients can receive the type of care and treatments that they need.

Check out their page on Facebook

https://www.facebook.com/rarepatientvoice/

Follow them on Twitter

Tweets by rarepatientvoic

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Thank you for reading

We are proud to partner with Rare Patient Voice through the Referral Program

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Visit our About FibroFlutters page

Visit our Rare Disease Advocacy page for our rare disease advocacy arm – ZebraStrutters

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_{FibroFlutters / ZebraStrutters:}

We are a Patient Advocacy Organisation & online social media communications network. 

Our services are for people affected by chronic illnesses and rare disease. This includes patients, care providers, health professionals and those within the medical healthcare and life-science related industries. #notjustpatients.

Working to help develop, nurture, and help to create a multidisciplinary approach to all aspects of medical healthcare so that chronic illness & rare disease patients can receive the type of care and treatments that they need.

With a focus on Ehler’s Danlos Syndromes, Pigmented Villonodular Synovitis, Fibromyalgia but, also, including musculoskeletal disorders and associated rare diseases.  There are over 300 undetermined musculoskeletal conditions with many of them causing high rates of work absenteeism and disability. 

_{The work we do}

The work we do involves disease awareness, health awareness, and, helping to point people in the direction of where to get legitimate health communications and information. As well as this we attend events and use patient voice to get important messages to help create better systems and processes for patients.

Our efforts also include advocating for the need to improve patient engagement processes within the drug development process and research and development.  Hoping for the better development of therapies and treatments within the pharma, medical, and clinical environments. For instance, involving patients and teams of multi-stakeholders from across the health, medical and clinical research landscapes including academia and pharma.

Providing relevant health information from respected and reputed resources is important to ensure that people are educating themselves from proper places. A better way to provide support and relief to patients, their families, and their caregivers.  This also aids the advancement of public education by raising awareness of the need for multi-disciplined patient healthcare pathways, and access to care. Such ‘approaches’ which can help to change patients’ lives for the better by meeting their needs.

We advocate and encourage more efficient patient engagement practices with a view to the better development of therapies and treatments within the pharma, and clinical, environments. Working on projects and in partnerships, to enhance patient engagement, and speak at varying events to spread the mission of FibroFlutters.

_{Why we advocate for a multi-disciplined approach to our healthcare.}

Patients with chronic and rare conditions are left to manage life with multiple chronic disorders and very little healthcare support. Usually, only getting to see one specialist at a time when the conditions run in line with each other sharing comorbidities etc.  We need our health looked at holistically and is why we advocate for a multi-disciplined approach to our healthcare.

To develop better treatments, products and patient healthcare we believe that the collaboration of minds from within pharma, medical, clinical and life-sciences can provide optimal results. Engage with patients and add the patient voice and those results would be more than optimal!

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