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“Are we there yet?” Designing communication initiatives based on community needs – the Comms Working Group at SMA Europe

ByJana, Nadya, Stefan and Emilia – representatives of Comms Working Group at SMA Europe

The coordination of communications in an umbrella organisation, such as SMA Europe, is always very exciting. Comms need to be “transversal”: they need to cover as wide a spectrum as possible of the reality you want to raise awareness of. Comms is also an area that is of interest to everyone in your organisation. Each project may follow a tailor-made agenda, but it needs to be included in the general communications strategy.

In SMA Europe we strive to support our members in their everyday actions. Our community includes 26 national organisations, each composed of all those who live with SMA, including their families and carers. We need to find a way to deliver information without making anybody feel left behind, while also following a certain structure and ensuring there is coherence in the content we deliver. We need to find a balance.

This is why, at SMA Europe, we chose to always work around just one central idea: having the perspective of our SMA community at the heart of every message we prepare. This is also the main reason for the creation of our Communications Working Group, at the beginning of 2023.

What does our Comms Working Group look like?

Our organisation is very lucky to count on an amazing team of volunteers who decided to join this working group. Jana, Judith, Laetitia, Nadya, Sara, Simona, Stefan and Véronique have decided to support the idea from the start. The team is very diverse. It now includes members from eight different countries, and we hope that we will find a way to also include the voices of the countries that are not yet involved.

The team and the communications manager meet every three months to gather ideas as well as to design and participate in the initiatives with which the volunteers of the Comms Working Group feel most comfortable.

Emilia Debska, communications manager 

Nadya, the volunteer from SMA Family Foundation Russia, states:

“For me, joining Comms Working Group was an important decision to make because I realise how fundamental it is to work together having the same goal: to express your ideas, thoughts and opinions from your own SMA perspective and to share them with others. Being a member of this working group makes me feel needed and trusted while fulfilling common social objectives. And I hope, together, we’ll make our humble contribution to the SMA community and society as a whole.”

The team also gives its opinion and it is invited to debate different initiatives and potential actions that are designed within SMA Europe’s communication strategy. We feel this is an effective way to ensure that the content we develop not only represents as full a spectrum of perspectives within the SMA community as possible, but also aligns with SMA Europe’s vision and mission.

As Stefan, our volunteer from Vereniging Spierziekten Nederland organisation says:

“If you have been diagnosed with SMA, I believe that it is important to take an active role in advocating for better treatment options and helping raise global awareness of the disease. By joining the Communications Working Group of SMA Europe, I am given an excellent opportunity to connect with other patients, families and healthcare professionals who are working to improve the lives of people with SMA. I also love the fact that, in being a member of this Working Group, I have the chance to share my experiences and help shape the conversation around SMA.”

Shaping the future around SMA.

Communication is key in every aspect of our lives. In SMA Europe we learn every day how to engage and strengthen our community while fighting for common goals. It could not be done without our volunteers. Comms Working Group is an incredible opportunity to place the voice of people living with SMA in the centre of all our actions.

Jana, who volunteers both in the Comms Working Group as well as in the SMA Europe Adult Committee remarks:

“As a patient with SMA, being part of the SMA Comms Group is an incredible honour, and a wonderful opportunity to create new friendships and discover new horizons in the patient advocacy field. It is my understanding that people with SMA deserve to have access to useful programmes and working groups, where they can share their achievements and work together for a better future. SMA Comms Group raises the voice of the SMA community and underscores the fact that people with SMA are valuable members of society while sharing stories and exchanging experiences in the field of patient advocacy.”

The work of the Comms Working Group aligns with the strategy of SMA Europe as a whole. Together with other working groups and committees in our organisations, it aims to ensure there is a constant link between what we do, what we need, and what we choose to communicate. This coordinated approach amplifies our well-founded arguments when they are articulated by the powerful voice of our volunteers.

We keep learning though. It is still a brand-new path for SMA Europe that we decided to follow when we created the Comms Working Group, and we don’t want to forget that there is a huge learning curve ahead of us.

We need to keep ensuring diversity and putting our efforts into reaching out, constantly, towards those collectives who may not yet feel fully represented. We need to investigate new ways and new communication channels; we want our voices to be heard, so we need to find adequate tools and be ready to learn and evolve. We also want to engage other profiles that are not yet represented within our Working Group, including the carers of people living with SMA, among others.

We are optimists though. Comms Working Group counts on a great, professional and open-minded team. This is why SMA Europe’s claim “All together. One goal” now has the huge opportunity to resound louder than ever.

SMA Europe

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