Hello everyone this is just a brief note to say that redevelopment and rebranding is happening.
Our site is currently old and sporting some posts that need attention. We need to get rid of dead links and update everything. Redevelopment and rebranding is essential to us moving forwards.
Since the addition of ZebraStrutters we are also rebranding. FibroFlutters and ZebraStrutters will still operate as is under the umbrella of Flutters and Strutters.
We apologise in advance for any inconvenience caused during our transition. However, our site will still be working for the time being.
Gratitude to those who have enabled our redevelopment and rebranding mission
Our upcoming redevelopment and rebranding would not be happening if it weren’t for the help and support from Paul Simms and Emma Booth. During the month of February 2022 they collectively raised £1500 to help us to bring this website up to date and to make the necessary changes.
Emma Booth who ran a marathon to help raise funds for our organisation’s redevelopment. A ‘superwoman’ running marathons to help raise awareness and fundraise for charities.
Transforming R&D through Human Data Initiative and works for Amgen
Together they helped to fundraise for Flutters and Strutters as we embarked on plans for rebranding to encompass FibroFlutters and ZebraStrutters united together. It has always been part of our plans to develop to this point where we support both chronic and rare disease. Redevelopment of our website is included in those plans.
ZebraStrutters RareDisease Advocacy became part of us 2 years ago, and officially part of our website last year for rare disease awareness.
This transition will include a new name, new logos, new banners and a brand new website that will enhance our capabilities to provide the help and support to our readers and members.
One of our Trustees and good friends, Paul Simms who completed 65km across the whole month alongside 5 strength workouts per wk.
Known for being a ‘Pharma Provocateur’ and Chief Executive at Impatient Health
We also aim to undergo some safeguarding certifications that align with our mental health community support.
David Ross who runs a community mental health support group for men with rare disease, and caregivers, is chief admin at our online Mental Health community. Together we are currently reconstructing and co-developing the FibroFlutters Mental Health community for chronic illness and rare disease patients.
Mental health support is something that has always been an element of FibroFlutters since we began in 2014 and remains important to us.
We also provide a network for everyone and #notjustpatients bringing together multi-stakeholders and sharing news and views from across the pharma industry, medical news, healthcare industry, clinical research, digital health, artificial intelligence in healthcare, public health, social care and life-sciences.
Thank you Paul, and Emma, for helping us to move closer towards our dream of taking that much needed next step of our development. Your support means the world to us.
We also extend our gratitude to everyone who donated and supported their campaign in February. Because of you we can make changes, improve our network, and support services for those affected by chronic, undetermined and rare illnesses.
As of 25th April 2022 Flutters and Strutters are 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.
It’s official Flutters and Strutters are now listed as a non trading registered company with Companies House.
Reg. No. 14065901
I now look forward to making us a Community Interest Organisation as originally planned.
My gratitude of course goes to our Trustees and Advisors for helping with our development this last 2 years. Also to everyone who continues to support us.
Time now to look to the future at last.
Wishing you all wellness as always
Director of Flutters and Strutters
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
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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