International SMA Patient Advocacy Group Meeting

In conjunction with the 2023 Annual SMA Conference, Cure SMA held its first-ever International Patient Advocacy Group Meeting with key stakeholders from the spinal muscular atrophy (SMA) community from around the globe. A recording of the meeting, as well as additional information, can be found below.

We invite you to check out the recording of the International Advocacy Group Meeting below. Be sure to turn on the Subtitles/Closed Captioning option in YouTube to translate to your language of choice.

 

Additional Information 

View the agenda for the first-ever International Meeting at the Annual SMA Conference by clicking here.

Meeting Presentations:

• Welcome and Introduction - Kenneth Hobby, President, Cure SMA
• Care and Combination Therapies – Dr. Mary Schroth, Chief Medical Officer, Cure SMA
• Real World Evidence and APAC – Julie Cini, Spokesperson, Advocacy Beyond Borders
• Advocacy Best Practices – Maynard Friesz, Vice President, Advocacy Cure SMA
• Access to Medicines: The Role of Patient Advocacy – Dr. Nicole Gusset, President & CEO, SMA Europe
• ALAME: Coordination Across Countries, Groups, and Differences – Maria Isabel Acevedo, President, SMA Foundation Colombia and Vanina Sanchez, President, Latin America SMA Alliance
• Challenges in Standard of Care and Access Wins – Alpana Sharma, Founder and Director of Patient Advocacy, and Moumita Ghosh, Founder and Director of Events & Family Support, Cure SMA India

View the listing of nearly 50 organizations represented at the International Patient SMA Advocacy Group Meeting by clicking here.

Inspired by Homer’s epic Odyssey adventure, OdySMA is a bold initiative to reveal the ‘quest for access’ of people living with SMA by mapping, visualizing, and centralizing knowledges and data around access issues. Click here to learn more.