Part of Flutters and Strutters Organisation
We’re stripey and proud
We can hear hooves!…
Rare Disease Advocacy with Zebra Strutters
Rare Disease advocacy with FibroFlutters and ZebraStrutters
This 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 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.
Zebra Strutters is 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
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.
We also work alongside many rare disease organisations and groups to help each other raise awareness and support each other via Dazzle4Rare (see notes further down the post).
Thanks to Kerry Wong (aka Float like a Buttahfly) I had the opportunity to join others and share my voice at the importance of supporting Dazzle4Rare. Kerry wrote this herself in support of Rare Disease Day 23 so we are grateful to have been invites to participate.
Read her post from her Sarcoidosis News here and as you can see you can also subscribe to get regular updates too!
Finally, in recognition of Rare disease Day 23 I have decided to re-introduce our lovely zebra mascot. Due too fluctuating health issues, etc, I didn’t get the opportunity to pose a final poll to pick a name.
Anyhoo, out of all the wonderful names put forward I have chosen Zoella and I hope she serves us well during our awareness campaigns.
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)
Partnerships and friendships
Partnership – Rare Patient Voice
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.
Ataxia and Me
Alan Thomas Founder of Ataxia & Me who stood by me and has also given sound advice over the last few years. We work quite closely with them on a variety of advocacy missions and provide important support to each other’s organisations.
Ataxia and Me is a patient focused charity (1184030) based in West Wales with a Global following aiming to provide Awareness, support and information relating to Ataxia, associated Rare diseases and movement disorders.
Ataxia is a Greek word meaning lack of order and Ataxia and Me’s mission is to bring back some order to the lack of order.
Around 10,000 people in the UK are in the early stages of Ataxia – a degenerative disease of the nervous system that can affect children and adults alike and can leave sufferers in a wheelchair and unable to complete everyday tasks. The condition is caused by damage to the cerebellum, the part of the brain responsible for coordinating movement, and causes symptoms which look a like those of someone being drunk – slurred speech, stumbling, falling, and lack of coordination.
Dazzle 4 Rare
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 during the month of August.
Link to this years event page on Facebook https://www.facebook.com/events/478663080299730/
Men’s Rare Disease Mental Health Support Group
Founded, by friend and fellow patient advocate David Ross, for men who live with rare disease to have an avenue for mental health support from other men with rare disease. It is also open for men who are spousal care givers to their partners with rare-disease.
David holds regular zoom meet-ups for them to discuss their current issues, and sometimes they have special speakers. You can discover them via their LinkTree > https://linktr.ee/mrdmh
Flutters and Strutters has a mental health community that David is our chief admin for. It is one of our aims as an organisation to provide regular zooms for the lady zebras that mirror what Davids group does.
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!