EAMDA Secretariat office
EAMDA – European Alliance of Neuromuscular Disorders Associations
İpek Badırgalı is a chemical engineer. She has masters degree in Marketing. İpek has worked in different roles in her career such as sales, corporate communications and marketing. She is currently working in a chemical company as marketing & business development manager.
She is auntie of Ece Boyacıoğlu who is SMA type 2 patient. İpek has been making efforts on spinal muscular atrophy and rare disease area since she met with SMA. She worked as a board member in KASDER, Turkish Neuromuscular Diseases Association. She has crucial impact in patient advocacy activities in Turkey and led the Turkish government supplying medicines of SMA patients.
She has been close contact with EAMDA since 2018. İpek voluntarily worked as SMA Patient Expert in PARADIGM project of EURORDIS which aims to optimize patient engagement in medicines R&D.
She is founder of Ecelereumutol, a national online platform which aims to increase SMA & rare disease awareness in the community and undertakes informative activies to help patient families.
She is the co-author of the book: “Ece’nin Küçük Hayalleri” with her niece Ece Boyacıoğlu that consists of Ece’s drawings and information about SMA.