Please read this page outlining the privacy policy of FibroFlutters and also our additional post that can be found further down the page.
Who we are
Our website address is: https://fibroflutters.com.
Comments
When visitors leave comments on the site we collect the data shown in the comments form, and also the visitor’s IP address and browser user agent string to help spam detection.
An anonymized string created from your email address (also called a hash) may be provided to the Gravatar service to see if you are using it. The Gravatar service privacy policy is available here: https://automattic.com/privacy/. After approval of your comment, your profile picture is visible to the public in the context of your comment.
Media
If you upload images to the website, you should avoid uploading images with embedded location data (EXIF GPS) included. Visitors to the website can download and extract any location data from images on the website.
Cookies
If you leave a comment on our site you may opt-in to saving your name, email address and website in cookies. These are for your convenience so that you do not have to fill in your details again when you leave another comment. These cookies will last for one year.
If you visit our login page, we will set a temporary cookie to determine if your browser accepts cookies. This cookie contains no personal data and is discarded when you close your browser.
When you log in, we will also set up several cookies to save your login information and your screen display choices. Login cookies last for two days, and screen options cookies last for a year. If you select “Remember Me”, your login will persist for two weeks. If you log out of your account, the login cookies will be removed.
If you edit or publish an article, an additional cookie will be saved in your browser. This cookie includes no personal data and simply indicates the post ID of the article you just edited. It expires after 1 day.
Embedded content from other websites
Articles on this site may include embedded content (e.g. videos, images, articles, etc.). Embedded content from other websites behaves in the exact same way as if the visitor has visited the other website.
These websites may collect data about you, use cookies, embed additional third-party tracking, and monitor your interaction with that embedded content, including tracking your interaction with the embedded content if you have an account and are logged in to that website.
Who we share your data with
If you request a password reset, your IP address will be included in the reset email.
How long we retain your data
If you leave a comment, the comment and its metadata are retained indefinitely. This is so we can recognize and approve any follow-up comments automatically instead of holding them in a moderation queue.
For users that register on our website (if any), we also store the personal information they provide in their user profile. All users can see, edit, or delete their personal information at any time (except they cannot change their username). Website administrators can also see and edit that information.
What rights you have over your data
If you have an account on this site, or have left comments, you can request to receive an exported file of the personal data we hold about you, including any data you have provided to us. You can also request that we erase any personal data we hold about you. This does not include any data we are obliged to keep for administrative, legal, or security purposes.
Where we send your data
Visitor comments may be checked through an automated spam detection service.
Please also read this Disclaimer / Privacy Policy post:
Thank you for reading our Privacy Policy information
If you have any concerns or questions about this Privacy Policy please email carole@fibroflutters.com
Patient, Health, Research, Medical, Clinical, Digital Health and Pharma news, information, communications, advice, reviews and resources
Visit our About FibroFlutters page
Visit our Rare Disease Advocacy page for our rare disease advocacy arm – ZebraStrutters
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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