#chronicillnessVOICE | Health & medical related mini-mag for everyone| February 2019 | #notjustpatients

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Awareness Campaigns

Find Me A Cure

In the world of patient, research and health advocacy there are many subjects and topics for us to raise awareness about.

Very recently I found myself having a wonderful conversation with Daniela Shikova at ‘Find Me A Cure’, an organisation that matches patients with clinical trials, and vice-versa by matching pharma with possible patients.

During our conversation we discovered that not only do we have common ground but we also share similar views regarding the amount of awareness that is needed in order to pursuade people to get more involved with research and clinical trials. What could we do do improve this? How can we create a world where clinical trials are important, and noted as something we shouldn’t be afraid of just because we don’t understand the complex medical language of clinicians, and pharma?

Spreading the word by talking about it is one of the best methods and this next week at the eyeforpharma 17th Annual Barcelona Conference I will get to do just that, alongside other advocates during our Im-patient conference which sits on the eyeforpharma platform and is something that as patients we are really grateful for.

Very soon FibroFlutters website will have it’s own very unique widget for readers to search for appriate clinical trials for any illness anywhere in the World and Find Me A cure have already sent me some designs to choose from. This is an exciting new step for us and a fabulous way to help patients find clinical trials and learn to understand the importance of them in the process. Alongside the section of patient related commmunities and platforms that I am constructing for patients to find other patients and sources of support and advice, as well to help pharma, diagnostics and all clinicians find patient pools for trials, FibroFlutters will soon be reaching one of it’s higher purposes regarding research advocacy.

In the meantime until our widget is prepared and installed onto the website why not visit the Find Me A Cure website and read more about the work that they do, and while you’re there you can search for available trials.

Our new relationship with Find Me A Cure is a very special one and we look forward to working with them on other future projects in the name of research, and increasing the availability for all stakeholders to get involved… watch this space!


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#Awareness CAMPAIGN #EDS #EDSUK #HSD #EhlersDanlosSyndrome

Subscribe to ‘Fragile Links’ a regular members magazine >>>

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Clinical Trial Recruitment | Take a Proactive Step for Parkinson’s Disease Patients
via CureClick and WEGO Health

Today, researchers are evaluating an investigational drug that focuses on the earliest stages of Parkinson’s disease that may potentially offer a new option for recently diagnosed patients. It is evaluating the safety and potential efficacy of an investigational drug that targets alpha-synuclein (α-syn), a molecule associated with Parkinson’s disease. The investigational drug is being studied to see if it may potentially help to slow or reduce disease progression.

If you or a loved one is experiencing issues with their management of recently diagnosed (within the last 3 years) Parkinson’s disease, click the link button below to get more information about this trial

Know someone who may be interested? Please feel free to share with your community.

 #Fibro2018  #FightFibro  #Fibromyalgia #Fibro  


FibroFlutters in Support:

#Fibromyalgia #fightfibro #Fibro2018 #fibroawareness #shoutitloud #Patients #JustGiving

Fundraising to raise £20,000 for Fibro drop-in centre  |  Rock Off Fibro ~ Fibromyalgia awareness

Quoted from Just Giving page:

“Weʼre raising £20,000 to Help fund the opening of the UKs 1st Fibromyalgia, drop in center to drive our work forward helping those with Fibro , Ptsd , Chronic pain”, Jackie Williams ~ Rock Off Fibro, Fibromyalgia Awareness

Please can you help such a worthy cause, patients are trying to help other patients?!


Visit Rock Off Fibro’s PUBLIC group on FaceBook  >>>

Visit Rock Off Fibro on Twitter  >>>

Rock off Fibro   @rock_off_fibro

#EpilepsyAwareness  #Epilepsy

The Turning the World Purple Foundation  |  Epilepsy | 

We are more than our diagnosis. Epilepsy is NOT who you are.
We are working to smash stigmas associated with Epilepsy through advocacy and education.

Maybe you could help out in some way and get involved 😃

Got a campaign you’d like to share, drop me an e-mail, Carole at fibroflutters@gmail.com

Social Media platforms

Patient’s Like Me

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I am Proud to be a member and Ambassador of @patientslikeme, the world’s largest personalized health network helping 600,000+ people with 2,800+ conditions find new options for treatments, connect with others and take action to improve their outcomes.

Join for free on A chance to change the future of personalized health.

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