When there are few specialists and no medical pathways to help your child's condition, you can feel like a pinprick in the priority of health care services. But your loved-one's health is just as important as those with well-known illnesses, so how can you get your voice heard about the rare - or undiagnosed - disease you are living with?
To help this, the European Organisation of Rare Diseases, has developed Rare Barometer Voices to gather voices, views and experiences of living with rare conditions. They'll then analyse, collate and amplify the views gathered to speak as one community. But to do this, they need your help - I've already joined to do my bit as a rare disease patient and parent.
Sandra Courbier of EURORDIS has written for SNJ to explain more about their innovative new tool.
Why Rare Barometer Voices?
There are very few of us in the world who share the same rare disease. However, as different as we are, we share similar symptoms and feelings, even if it's simply feeling lonely and powerless against our condition, or being left aside by the healthcare system we depend on. We also face the same physical disabilities and its impact on work, school, friends, physical activity, everyday tasks…
This reality unites us in many ways. But this unity is not yet noticed by policy makers all over Europe. Of course politicians are made aware of how many of us there are, they read the same numbers as we do: 30 million people suffer from a rare disease in Europe. But we appear sparse and too different from each other. Therefore, too difficult to deal with on a political level.
To tackle this issue, EURORDIS created a survey program called “Rare Barometer” for patients and their families. We have translated our website and questionnaires into 23 European languages to make sure that no one is left out, especially those who are not fluent in English.
We want to make the policy-makers aware of the fact that so many people who are living with different rare diseases actually have similar struggles that can be eased and subsidised by their respective national healthcare systems. But for that, we need to be united and express our voices through this barometer.
What is Rare Barometer Voices?
Rare Barometer Voices is a community of people living with a rare disease who are willing to participate in EURORDIS (European Organisation for Rare Diseases) surveys and studies. Our members include hundreds of patient support organisations, many of whom are in the UK. But you don't have to be a member of EURORDIS or a patient group to join Rare Barometer Voices.
Rare Barometer Voices is a EURORDIS initiative that aims to make the voice of rare disease patients stronger. The objective is to transform your opinions and experiences about topics that directly affect you into figures and facts that can be shared with a wider public. You can register here.
Who can register?
Patients, parents, siblings or other family members, patient representatives and carers can register to share their experiences and thoughts. Participants should live in one of the European continent countries (48 countries)
How does it work?
- You will be sent an email to request your participation in each new survey related to subjects that concern you. You are free to decide which surveys you want to participate in.
- Next step – fill out the survey! The survey data will then be collated and analysed to provide data on a European and also national level, as well as according to specific diseases.
- Finally, you will be sent the results of the survey by email so that you can get insight into what other people in similar situations to you feel and think.
We are counting on you looking forward to seeing you among our participants. Please do email me with any questions at firstname.lastname@example.org
She is also an experienced broadcast and print journalist & author. Tania also runs a PR, web & social media consultancy, SocialOro Media. She is a Rare Disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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