#SMAtters

We need you

Access to SMA treatment, care and support across Europe is fragmented and unfair.

We need to collect evidence and we need to rise up together to force change.

Help us make this happen!

A letter from Nicole

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Nicole GussetPresident, SMA Europe

What is OdySMA?

OdySMA, inspired by Homer’s epic Odyssey adventure, is a bold initiative to reveal the 'quest to access' of people living with SMA; by mapping, visualising and centralising knowledge and data around access issues. OdySMA has one central message:

No one is left behind!

What does this mean? This means unrestricted access to the optimal medicine, treatment, care and diagnostics available regardless of location, age, mobility or SMA type. This is the only outcome which will end access inequality that SMA families had to live with yesterday and live with today.

But we don't want to live with it tomorrow, and not the next day! So let us rise together today for change!

Only together, as an active and engaged community, can we breathe life into the campaign so that ultimately our concerns are heard by decision-makers. Only in this way can we bring about political change. We need to generate evidence together so that we can bang the drum! Everyone counts.

OdySMA is a dynamic tool that we are using to create an SMA atlas that visualises systematically collected data to illustrate access pathways. To optimise our impact, we want to collect "real-time" data. This is where you are needed! As an SMA community, we can make a difference together - we need your stories and personal experiences. And we need a home to use the power of social media to show the human impact of health policy:

#SMAtters

We have conceptualised three principal engagement tools, however we need to gauge the interest and participation levels from the SMA community before embarking on our journey.

Let us know what you think!

Bang the Drum!

OdySMA belongs to you, so our first step is to gauge our communities interest in our direct action concepts. Please indicate if you would participate in each of our 3 proposed ‘engagement tools’ by clicking on either the ‘tick’ or ‘cross’ icons.

The Access Test

Simply insert your location, age and SMA type to reveal the treatment, care & support currently available to you.

However...

  • What if you lived in a different location?
  • Were a few years older or younger?
  • Had a different SMA type?

Compare your real-life status to other personas to prove access inequality. Download your comparison results & share automatically at #SMAtters

Would you take the test?

The Journey

Reducing delays & removing access barriers are OdySMA core objectives.

'Your Journey' is a map, tracking access delays in real-time. Create a secure account, insert your date of diagnosis & then your access to treatment date.

Help us visually measure delays and generate the continuous evidence we need to pressure for change.

Would you come onboard?

Real-life Stories

Take direct action and tell your story via your online ‘access diary’. Insert dates, diary notes and even photos to update your access journey.

We want to broadcast what access delays inflict on individuals living with SMA, their families and friends, but also broadcast the positive results of progressive healthcare policies.

Would you tell your story?

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Visualising the data

The pillars of OdySMA are a collection of core interactive maps and timelines, featuring multiple data views.

OdySMA will provide country-by-country views and like-for-like comparisons on all available data relevant to Spinal Muscular Atrophy and the quest for equal access.

Organising, mapping and visualising this volume of data has never been attempted for a disease before - however this monumental effort will result in an evidence-based reference point for our goals of unrestricted access to optimal medicine, treatment, care and diagnostics for each individual living with SMA in Europe.

OdySMA will be developed over a 2.5 year period, with a continuous rollout of additional mapping features and functionality. So make sure you are kept up-to-date by following our social media channels (#SMAtters hashtag) and by subscribing to our e-newsletter!