The Role of Volunteering in Rare Diseases: Raising Awareness and Building Solidarity

Making the needs of individuals living with rare diseases and their families more visible, sharing accurate information and raising public awareness are areas where volunteering can make a valuable contribution. Particularly in conditions such as spinal muscular atrophy (SMA), which require long-term support across multiple areas of life, volunteers’ involvement in information sharing, solidarity initiatives and rights advocacy helps develop more inclusive and sustainable support mechanisms.

Jale Serin Basım, Volunteer Coordinator at Türkiye SMA Foundation, will draw on the foundation’s work to discuss the importance of volunteering in the field of rare diseases and the roles volunteers can undertake. The webinar will explore Türkiye SMA Foundation’s awareness, support and advocacy activities, alongside its approach to volunteering, to illustrate how volunteers contribute to initiatives supporting individuals living with SMA and their families.
Through practical examples, the webinar will examine the key characteristics of rare diseases, volunteering needs in this field, and volunteers’ involvement in awareness campaigns, information sharing and solidarity initiatives. Drawing on Türkiye SMA Foundation’s volunteering model, it will also explore how volunteers are prepared for their roles, take on different tasks and responsibilities, and turn their contributions into lasting social impact.

We invite everyone interested in exploring the role of volunteering in rare diseases, helping raise public awareness of SMA, and taking part in solidarity and advocacy initiatives through volunteering to join this webinar.

The webinar is being organized within the scope of the International Volunteer Year (IVY). It is free of charge, and participants will receive certificates upon completion.

Event Date: December 17, 2026
Time: 20:00 Türkiye time (UTC+3)
Registration Link: https://ilatalks.com/webinar/163