SMA-DER
Association for Combating SMA Disease (Turkey) is a non-profit, non-governmental association, established in 2017 by parents of children affected by SMA and adults SMA patients.
Our main goal is to increase the quality of life of those affected by SMA and their families. Our association strives to raise public awareness, protect the interest and the rights of
patients, improve their social care and medical support. The idea is to build a community for Spinal Muscular Atrophy families and individuals, advise them and make their lives easier.
Our final intention is to get the right treatment for every single patient, child and adult, so we can watch them grow, improve and prosper in many fields in life.
She is the Vice-Chairman of the Board of the Association for Combating SMA Disease. She has a son of 4 years old SMA Type 1 patient. While continuing her teaching as a
profession for 3 years, she has been working voluntarily to improve the quality of life of patients with SMA and respiratory.
She closely monitors the problems experienced by SMA patients and patients connected to the respiratory device, in this sense, organizes seminars for Healthcare Professionals and
society.
-She worked in the movie "I SMA".
-She is participating in official institutions held by the Grand National Assembly of Turkey and its policy development in the role of representing SMA patients.
-She provides informative training on rights advocacy to patients and relatives.
- She took part in the “Free SMA Carrier Screening” awareness campaign.
- She serves as chairman of Eskişehir city council for Project of ‘’ Handicapped people will be in Assembly ‘’ supported by European Union
-She completed his master's degree in Education Assessment and Evaluation. ---She attended the Training of Individuals with Special Needs.
-She attended the EU Project preparation techniques course.
-She attended the fire training course.
-She attended a special training course.
-She participated in a search, rescue and evacuation training seminar..
He is an Accountant Member of the Board of the Association for Combating SMA Disease. He has 4 years old SMA type-1 patient son. He received his master's degree in Education
Management and Supervision.
-He attended many workshops held in the field of SMA and Rare Diseases.
-He participates in field studies by organizing visits to patient and relatives.
-He is actively involved in SMA Disease Family Information meetings.
Call 2020 Round 1 KA2 - Cooperation for innovation and the exchange of good practices
KA202 - Strategic Partnerships for vocational education and training
Form ID: KA202-388BE7BE Deadline (Brussels Time) 2020-04-23 12:00:00
EN 29 / 168
-He participates in television and radio programs.
-He received Public-NGO Cooperation Training
-He took part in the filming of "I am SMA".
-He participates in training like national and international congresses, symposiums etc. on SMA Disease and Rare Diseases.
-He is the Project coordinator of the SMA Disease Painting Competition organized by our Association at primary, secondary and high school levels.
-He attended the Training of Special Skilled Individuals course.
-He attended the EU Project preparation techniques course.
-He attended the fire training course.
-He attended a special training course.
-He participated in a search, rescue and evacuation training seminar.She is a member of the Board of the Association for Combating SMA Disease. She has relatives with SMA disease.
-She participated actively in activities organized within the scope of social awareness studies.
-She received training on effective communication and diction.
-She participates in field studies by organizing visits to patient and relatives.{mlang}
Our main goal is to increase the quality of life of those affected by SMA and their families. Our association strives to raise public awareness, protect the interest and the rights of
patients, improve their social care and medical support. The idea is to build a community for Spinal Muscular Atrophy families and individuals, advise them and make their lives easier.
Our final intention is to get the right treatment for every single patient, child and adult, so we can watch them grow, improve and prosper in many fields in life.
Ece SOYER DEMİR (Relatives of the Patient-Teacher)
She is the Vice-Chairman of the Board of the Association for Combating SMA Disease. She has a son of 4 years old SMA Type 1 patient. While continuing her teaching as a
profession for 3 years, she has been working voluntarily to improve the quality of life of patients with SMA and respiratory.
She closely monitors the problems experienced by SMA patients and patients connected to the respiratory device, in this sense, organizes seminars for Healthcare Professionals and
society.
-She worked in the movie "I SMA".
-She is participating in official institutions held by the Grand National Assembly of Turkey and its policy development in the role of representing SMA patients.
-She provides informative training on rights advocacy to patients and relatives.
- She took part in the “Free SMA Carrier Screening” awareness campaign.
- She serves as chairman of Eskişehir city council for Project of ‘’ Handicapped people will be in Assembly ‘’ supported by European Union
-She completed his master's degree in Education Assessment and Evaluation. ---She attended the Training of Individuals with Special Needs.
-She attended the EU Project preparation techniques course.
-She attended the fire training course.
-She attended a special training course.
-She participated in a search, rescue and evacuation training seminar..Mehmet DEMİR (Relatives of the Patient - Teacher)
He is an Accountant Member of the Board of the Association for Combating SMA Disease. He has 4 years old SMA type-1 patient son. He received his master's degree in Education
Management and Supervision.
-He attended many workshops held in the field of SMA and Rare Diseases.
-He participates in field studies by organizing visits to patient and relatives.
-He is actively involved in SMA Disease Family Information meetings.
Call 2020 Round 1 KA2 - Cooperation for innovation and the exchange of good practices
KA202 - Strategic Partnerships for vocational education and training
Form ID: KA202-388BE7BE Deadline (Brussels Time) 2020-04-23 12:00:00
EN 29 / 168
-He participates in television and radio programs.
-He received Public-NGO Cooperation Training
-He took part in the filming of "I am SMA".
-He participates in training like national and international congresses, symposiums etc. on SMA Disease and Rare Diseases.
-He is the Project coordinator of the SMA Disease Painting Competition organized by our Association at primary, secondary and high school levels.
-He attended the Training of Special Skilled Individuals course.
-He attended the EU Project preparation techniques course.
-He attended the fire training course.
-He attended a special training course.
-He participated in a search, rescue and evacuation training seminar.Günay SOYER (Relatives of the Patient - Housewife)
She is a member of the Board of the Association for Combating SMA Disease. She has relatives with SMA disease.
-She participated actively in activities organized within the scope of social awareness studies.
-She received training on effective communication and diction.
-She participates in field studies by organizing visits to patient and relatives.Última modificación: Tuesday, 8 de November de 2022, 16:40