Once again this year at FibroFlutters we are supporting Dazzle4Rare 2021 and joining many Rare Disease groups, charities and organisations. Our mission is to help get our rare diseases noticed and increase awareness and much needed funding.
8 AUG AT 03:30 UTC+01 – 15 AUG AT 03:30 UTC+01
Dazzle4Rare was established in July of 2016 with a simple goal of signal boosting rare and undiagnosed patient and community messages. Since that first August week long event, we have been working with allies, advocates, small and large non-profit organisations, and others who wish to elevate rare and undiagnosed voices. – https://www.dazzle4rare.net/
We are proud to partner with Kimberly Thomas-Tague and #Dazzle4Rare and join many other organisations to support this years campaign to raise awareness for Rare Diseases. 8th – 15th August.
Want to know how to participate click the button >>>
Dazzle4Rare in 3 Steps
How you can join in with FibroFlutters & ZebraStrutters for Dazzle4Rare 2021
Add your story to our Are you aware of this rare? series, for Dazzle4Rare 2021
Since last year we have set up our Rare Disease Advocacy Arm ZebraStrutters which we utilise to support Ehlers-Danlos Syndromes, Hypermobility Spectrum Disorders and other Rare Musculoskeletal Diseases. Also, setting up a support arm for Ultra Rare Disease Pigmented Villonodular Synovitis.
Aside from this we like to help other rare disease groups and advocates share their rare stories.
Are you aware of this rare? is Zebra Strutters Rare Disease Series and is a perfect avenue to share your rare disease stories. Tell people about the conditions that you live with and uncover your rare conditions. An opportunity to put them out there to help educate and raise awareness.
This Story Portal can be used by caregivers as well as patients, family members, doctors, researchers, and specialist clinicians. Our hope is that you will accept our invitation to share your rare stories with us. Come and #StrutYourStripes with us
Zebra Strutters – Are you aware of this rare?
Let us help you to get your stripes noticed and hooves heard.
Zebra Strutters – Rare Disease Advocacy Arm of FibroFlutter Patient Advocacy Organisation
Contact – firstname.lastname@example.org
Flutters and Strutters
FibroFlutters and 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 care providers, health professionals and those within the medical healthcare related industries. #notjustpatients
Advocating for a Multi-Disciplinary approach to all aspects of medical healthcare.
To help develop, nurture and help to create a multidisciplinary approach to all aspects of medical healthcare so that #chronicillness & #raredisease patients can receive the type of care and treatments that they need.
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.
Bridging the gap between stakeholders is a different type of awareness raising. It involves sharing events and campaigns by clinicians, pharmaceutical companies, patient led projects, healthcare providers… the list is quite variable. We have newsletters to ensue this which uses our slogan – #chronicillnessVOICE for everyone #notjustpatients
The UK’s First Network of Connected Community Maps by It’s A Doddle
Incorporated under the Companies Act 2006 as a private company, that the company is limited by guarantee, and the situation of its registered office is in England and Wales. Reg. No. 14065901