More than 150 attend special Rare Disease Day event in Poland
From Teresa Zoladek we received this report of Rare Disease Day in Poland:
"Rare Disease Day 2019 at the Institute of Biochemistry and Biophysics Polish Academy of Sciences was a success. We had 150 registrations and the room was full. We invited clinicians, scientists studying mechanisms of rare diseases, specialists in the psychology of rehabilitation, one patient and two parents/caregivers. One parent was the mother of the first diagnosed ChAc patient in Poland who gave the interview to Joanna Kaminska.
"We also had a photo exhibition by Beata Muchowska, 'Teachers of Love' and we collected donations for Fundation EB Poland, a rare disease. We collected two times more monay than last year. We also gave participants the special issue of Postepy Biochemii (Advances of Biochemistry, the journal of Polish Society of Biochemistry (IV, 2018), which was devoted to rare diseases.
Entrance was free.
"All was sponsored and co-organized by Institute of Biochemistry and Biophysics PAS (IBB PAS), Institute of Mother and Child, Polish Society of Biochemistry, Polish Society of Cell Biology, and Eppendorf. I had a lot of positive feedback and congratulations."
Patient Piotr, Teresa, parents Jozef and Maria Undas Musial.