It is time to ‘dazzle’, ‘strut your stripes’ and share ‘rare voices’ for #dazzle4rare2020! 9 – 14th August


Annual Cross-Community Rare-Awareness

9 – 14th August

What is #Dazzle4Rare?

Dazzle4Rare is a week dedicated to raising awareness of rare diseases where Rare communities and organisations cross-share each others experiences, articles and rare journeys across their social media channels to raise awareness. A big thank you to Kimberly Thomas Tague for organising the campaign.

Many rare disease communities are very small which makes it hard to raise awareness by themselves, so through joining forces during this week their voices are strengthened in numbers and become one giant ‘united voice‘ for rare disease awareness.

We are encouraged to also share information about the rare diseases too, and not just our life experiences living with them. It is good to share where information can be found about them, especially if they are ultra-rare conditions. You never know who might be reading, maybe someone with that condition sees that your organisation / community exists and thought they were all alone with their disease.

  • How can they contact you?
  • Who do they reach out to?
  • Where are the places to get information about the disease?

We can band together as a wider, greater community and spread awareness together and for each other. We can join hands and reach around the globe to share our messages with those who would otherwise never hear about many of these conditions.

Annual Cross-Community Rare-Awareness

Getting deeper involved – share posts from the ‘Dazzle4Rare’ social media pages and those of their partners, which you can find listed on the #Dazzle4Rare2020 FaceBook event page. Remember to tag your social media shares with #dazzle4rare.

Each day has a specific theme for posting in connection to the campaign and our rare diseases. There are also raffles that you can enter to win prizes that organisations donate and the monies raised go towards rare disease communities.

Christine Headwear have donated an ‘adult ladies turban’. HESA has also donated a ‘zebra print carry-all bag’ for the raffle. Here is the link –

Why is Dazzle4Rare important to me and FibroFlutters Patient Advocacy Organisation and Social Media Community Network?

My reasons for supporting Dazzle4Rare2020 are because there is a great need for us to let people know that we exist for Rare Diseases and not just chronic illnesses such as fibromyalgia, ME, mental health, bowel disorders etc.

As original founders we have several rare diseases amongst us as well as many of our supporters across our social media network. Being a Patient Advocacy Organisation we are here to support and help raise awareness for Rare Disease communities. As our organisation goes through redevelopment this year we are working to make this side of our organisation more visible with the introduction of our Zebra Strutters section specifically to share all Rare Disease communities that wish to join the Directory and share their campaigns with us.

  • Rare is many. Rare is over 300 million people around the world.
  • Rare is strong. The rare disease community is connected across borders and diseases to raise awareness and advocate for equity.
  • Rare is proud. Show your support for the rare disease community with pride! The likely truth is that you know somebody affected by a rare disease.

Our #dazzle4rare2020 poster please share if you see it along with the message below, thank you.

We #dazzle4rare#strutourstripes for #EhlersDanlosSyndromes and support #dazzle4rare2020 #EDS #HypermobilitySpectrumDisorders COMING SOON #watchthisspace for #ZebraStrutters at @FibroFlutters #RareDiseases #community

This is FibroFlutters #dazzle4rare2020 campaign poster

This week gives us the opportunity to let such communities know that we are here for them.

Aside from that it also gives us the opportunity to raise awareness of the rare diseases that have as founders and members. Ehlers Danlos Syndrome is one that is prevalent amongst members including myself and the rare disease charities we support are Ehlers Danlos Support UK and Ehlers Danlos Society

We also have an aim to help educate about the importance of patient involvement, and 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 and I hope to see you around during this week of Rare awareness. ~ Carole, Ian, Vicky, Sonia and Elaine… the founding team at FibroFlutters

View this post on Instagram

#dazzle4rare #zebra #zebrastripes

A post shared by FibroFlutters (@carole_fibroflutters) on

Quote from my Rare Disease Day 2020 post:

“Having rare disease makes us special people in a way, unique, because we’re so different and in my case there will be no one else like me because of the bone deformities and conditions that comprise of my skeleton, and also because of my genetics.”

Today is #RareDiseaseDay – Read my Patient Experience: Living with multiple rare diseases | Pharmafile | What’s your #Rare? care to share?