Part of FibroFlutters Organisation
We’re stripey and proud
We can hear hooves!…
Rare Disease Advocacy with Zebra Strutters
Rare Disease advocacy with FibroFlutters
It is with great pleasure to bring our Rare Disease Advocacy to the website. It has been in our ideas for the future the for a number of years now. Last year, it became clear that it was essential to get it sorted. This time last year I joined the Mentoring scheme through Findacure. With the help and support from them, and from my mentor Diana Perry, I have had the motivation, and encouragement, needed to develop it. Diana is the CEO and co-founder of rare disease charity Ectodermal Dysplasia Society (Registered Charity No. 1089135).
It was also possible with the help from Alan Thomas Founder of Ataxia & Me who stood by me and also gave sound advice. We work quite closely with them on a variety of advocacy missions and provide important support to each other’s organisations.
As an organisation FibroFlutters supports all rare diseases and we are open to listening to you and helping you to raise awareness. Through Zebra Strutters we aim to do just that!
Our ‘Are you aware of this rare‘ series is a perfect avenue to share your rare disease stories and tell people about the conditions that you live with. 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.
Zebra Strutters is also there in the capacity of a support arm for people with the ultra-rare disease ‘Pigmented Villonodular Synovitis’. A condition that one of our FibroFlutters Co-Founders was diagnosed with. Alongside this we are also a support services arm for people with Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD’s). Plus, any type of rare, or undiagnosed, musculoskeletal disorders
This new Section for Rare Disease Advocacy gives us the opportunity to raise awareness of the rare diseases that we have as founders and members. Ehlers Danlos Syndrome is one that is prevalent among our members including myself. The rare disease charities we support for this are Ehlers Danlos Support UK and Ehlers Danlos Society
We also have an aim to help educate about the importance of patient involvement, and patient engagement, within the clinical trial and drug development processes including their design and how and where to get educational resources, advice and help.
Thank you for reading
On a patient group level we support
Pigmented Villonodular Synovitis
Since FibroFlutters began back in 2014 there has been a few conversations about this ultra rare disease. Our co-founder and Founding Five Member Vicky has this condition and she soon found there to be very little support out there. We have spoken a number of times with respect to setting up a support arm for this condition. We are finally doing it for Rare Disease Day 2021, and Vicky is looking forward to connecting with other people out there who have been diagnosed with it.
Pigmented villonodular synovitis (PVNS) is a type of benign tumour in the synovial tissue, which is the soft connective tissue of your joints that allows them to move smoothly.
Building this network is important to us as an organisation, as well as for Vicky, and people with it. The hope is to build up a network across the globe with a view to developing a patient registry. A registry will help when considering potential research, and for approaching their general appointments. Having the ability to cross check each others disease against each other could provide beneficial information. Information that could help the medical research side of things to understand the condition better.
We invite you to contact Vicky via the button below to share your journey with PVNS with her. An opportunity to make contact with someone who has the condition. The invitation isn’t just for patients but for clinicians and researchers too!
(For those who have already been in touch previously please expect an email from me – Carole – this week where I will personally introduce you to Vicky. Apologies for such a long wait!)
Regarding Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD’s) we have been providing information and support for a few years now. The difference now is that it is more noticeable that we do. This section for Rare Disease has been a long time in the planning and now EDS has a proper home on FibroFlutters website.
As an organisation we support Ehlers Danlos Support UK (EDS UK) and Ehlers Danlos Society, and the Hypermobility Association (HMSA). Our doors are open to all. We are interested to hear your stories and are willing to share them here for you. You might have interesting articles and research that you think we should have on the site. When you have awareness campaigns or upcoming events we are also happy to help circulate them across our network.
If you are interested in contributing, or have something to share please contact Carole via the button below. Also, if you would like us to source some information for you please just ask. We can never promise, but we will always try!
Rare Disease Advocacy
Are you aware of this rare?
This is Zebra Strutters Rare Disease Series, which uncovers your rare conditions and puts them out their to help educate and raise awareness. Each one provides links to where you can find further information about the disease. Also, where possible we will point you in the direction of relevant charities, organisations and support avenues.
Let us help you to get your stripes noticed and hooves heard
- Pigmented Villonodular Synovitis (PVNS)
- Pigmented Villonodular Synovitis (PVNS) our Co-Founder’s patient experience with ultra rare disease. #dazzle4rare2020
- Our co-founders experience with PVNS
- Are you aware of this #Rare? Today is International Ataxia Awareness Day.
- Rare Disease Awareness with Alan Thomas Founder of Ataxia & Me
- Wolfram Syndrome (the event has passed by)
- Ehlers-Danlos Syndrome
Would you like to add your rare disease story to this list?
EDS is a genetic collagen disorder… maybe your mum, dad or siblings also have it. (photo by Carole)
As a patient led advocacy organisation partnerships are always something fabulous and we are very honoured to be partnered with a few organisations.
Partnership – People With Empathy
breaking down silos in health care
People with Empathy connects key stakeholders in healthcare in order to improve the quality of life of patients and care partners. We are bringing together a team with perspectives from multiple disciplines in health care, health research, health technology, patient and caregiver communities.
Fellow advocate and peer Christine Von Raesfeld is the CEO and co-founder and spends much of her time honouring the cause for patients. Making the lives of patients better through her advocacy and sharing her personal health journeys.
Please follow the link below to find out more about People With Empathy and all the other people involved
Partnership – Rare Patient Voice
Rare Patient Voice connect patients and family caregivers with confidential research studies and surveys and pay participants on a $100 an hour pay scale. Their studies and surveys are opinion based and are all about the patients and caregivers experience to help improve treatments, products, and services. They are expanding outside the US so please get in touch if you wish to find out more. Aswell as this they are also for chronic illness and rare diseases, just like we are!
We are happy to embark on this new partnership with Rare Patient Voice by being part of their referral program.
Get paid for your opinion
Patients (16 +) and Caregivers (family, friends) of any disability, disorder, syndrome, disease, or condition are provided an opportunity to voice their opinions through surveys and interviews to improve medical 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 on a $100 an hour pay scale.
Click on the link and sign up at ‘What Happens Next‘ below:
Please visit their website to learn more about who they are and what they do. You can do that via the link below.
Partnership – Jeeva Informatics / Jeeva Clinical Trials
FibroFlutters are proud and honoured to be assisting as media partners with Jeeva Informatics who provide solutions for patient groups. Data Ownership and Governance as Leverage for Patient Groups to Accelerate Therapies for their Disease.
We are supporting the new patient registry platform that they are developing. Being connected to Harsha K Rajasimha, who is the Founder and CEO, is brilliant. He is also the Founder and Chairman of IndoUSrare
His ideas are really moving forwards the change on how patients can own their own data and cheaply run their own registries. Their solutions for patient groups are something to check out and you can do that by following this link below.
Check out these useful links on this site
There are many useful links within these posts
This is an external link to Genetic and Rare Diseases Information Center (GARD) / National Institutes of Health / National Center for Advancing Translational Sciences (NCATS).
- Ehlers Danlos Syndrome hypermobility type | “Although hypermobile Ehlers-Danlos syndrome is regarded as a genetic condition, the underlying cause (gene or genes responsible) has not been identified.“
External link: Joint hypermobility syndrome | NHS CHOICES | “Most experts agree that joint hypermobility syndrome is part of a spectrum of hypermobility disorders which includes Ehlers-Danlos syndrome. Some people with hypermobility spectrum disorders do not have symptoms.”
We’re stripey and proud
We can hear hooves!…
Thank you for reading
Please note that this page will be constantly updating!