Ipek Badirgali

İpek Badırgalı received her BSc. in chemical engineering at Ege University, followed by master’s degree in marketing at Galatasaray University. She continues her education with a Master at Universita Cattolica, in Patient Advocacy field.

She has worked in managerial positions at the sales, corporate communications, marketing, and business development departments, during her professional life. After her niece Ece was diagnosed with SMA, she became acquainted with the field of SMA and rare diseases. She worked as Board Member at Turkish Neuromuscular Disorders Association, KASDER.  She made patient advocacy at policy making level and pioneered the healthcare system change in SMA disease management in Türkiye. She carries out active roles in the international associations and worked in the PARADIGM project of EURORDIS. She currently works as the secretariat at the European Alliance of Neuromuscular Disorders Associations (EAMDA). İpek Badırgalı is also the founder of the Ecelereumutol platform, which aims to raise awareness in SMA. She is the author of the book Ece’nin Küçük Hayalleri together with her niece Ece.