International SMA Patient Advocacy Group Meeting
2025 International SMA Patient Advocacy Group Meeting
Resources
- Check out our translated Care Series Booklets, which provide patients and families the information you need to make decisions about treatment and care.
- SMA Update in Best Practices Summary Report - Recommendations for Diagnosis Considerations. This report is also available in French, Mandarin, and Spanish.
- SMA Update in Best Practices Summary Report - Recommendations for Treatment Considerations. This report is also available in French, Mandarin, and Spanish.
- SMArt Moves - Healthcare Provider Quick Reference Guide.
- SMArt Moves - Parent Checklist 0-6 Months. Also available in Spanish.
- SMArt Moves - Parents Checklist 7-12 Months. Also available in Spanish.
- 2024 State of SMA Report.
- 2025 Annual Conference Booklet.
- SMA Community Risk Tolerance Update.
- NBS Birth Prevalence of SMA.
- Cure SMA Everyday Living Survey.
- SMA Update in Best Practices Full Report - Recommendations for Diagnosis Considerations.
- SMA Update in Best Practices Full Report - Recommendations for Treatment Considerations.
- 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 knowledge and data around access issues.
- SMAcademy is a SMA Europe capacity-building initiative for patient advocates in SMA. SMAcademy provides patient advocates with tools to amplify their efficacy and impact when advocating for a better life for people living with SMA.
- Global SMAdvocacy Event with the Activity Report 2024.
- Documentary: “One community. Shared dreams”.
- NBS Alliance | Home with its resources NBS Alliance | Resources & Tools.
- SMArt Moves Video Playlist: Learn to Spot to Spot the Warning Signs of SMA (English). Also available in Spanish.
Our 2025 Sponsors
The International Patient SMA Advocacy Group Meeting could not happen without our dedicated sponsors. Please contact [email protected] with questions and for more information on sponsorship opportunities.
View the 2023 International SMA Patient Advocacy Group Meeting Recording
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.
Our 2023 Sponsors
