SMA Newsroom

AdvocacyAug 12, 2022

International Youth Day 2022

Today, the 12th of August, we celebrate International Youth Day!
 
Listen to the TED talk of one of our youngest representatives, Jane Velkovski, who shares with us his vision about the life-changing power of assistive technologies.
 
"Freedom of movement, no matter on legs or wheels, is a human right," he says, and we couldn't agree more.
AdvocacyAug 1, 2022

SMA Awareness Month

The 1st of August marks the beginning of SMA Awareness Month.

Despite all the advances in research, care, and treatments, there is yet a lot to be done to ensure people living with SMA and their families attain the best quality of life across Europe.

SMA Europe's 24 members work together every day to create a better world for all those living with SMA. 

AdvocacyJul 26, 2022

Mencía de Lemus has beein appointed as a member of the Committee for Advanced Therapies at EMA.

Mencía de Lemus, our Spanish delegate, has been appointed as a member of the Committee for Advanced Therapies, representing patients' organisations.

ResearchJul 22, 2022

Launch of SMA Priority Setting Project

SMA Europe wants to give You a louder voice in research!

We are launching a project called the “SMA Priority Setting Partnership”, in collaboration with the James Lind Alliance, to identify the top 10 unanswered research questions that are a priority to people living with SMA, their carers and healthcare professionals.

We will soon launch a survey which will allow you to tell us what research would matter to you most. Keep a look out!