Our goals
The patient organization SMÁci, z. s. was founded in early 2017 with the aim of defending the interests of patients with spinal muscular atrophy and their families. SMÁci promotes, supports, and defends the interests of patients with SMA, persons close to patients with SMA and other caregivers for these patients. They also work together to ensure quality of life, care, support, and effective treatment for SMA patients.
What do we do?
We provide SMA information on our website and social media, provide telephone and in-person crisis intervention to SMA patients and their loved ones, as well as counselling and psychosocial support. We communicate with healthcare institutions, insurance companies, other organizations, and stakeholders in the Czech Republic and abroad. We organize psycho-rehabilitation summercamp stays for children and young people with SMA.
In 2022 and 2023, we are implementing the project “Improving care for SMA patients in healthcare facilities and expanding patient organisation services”, which is funded by the EEA Grants 2014-2021.
SMÁci, z. s. is a member of SMA Europe, a European patient organisation dedicated to SMA. We are also a member of ČAVO (Czech Association for Rare Diseases), AIP (Alliance for Individualized Support) and APO (Academy of Patient Organizations).
How many of us are there?
At the end of 2021 we had 186 members, including:
- 42 minor patients.
- 50 adult patients
- 87 legal guardians
- 7 other people interested in membership and SMA topics
The committee of our patient organisation
Other collaborators of the patient organisation
In addition to the patient organization committee members and other staff members listed above, we have many other people who help us with our operations, such as those who are involved in specific areas of patient care or are otherwise active in the operation of SMÁci:
Ondrej Hlavica (This email address is being protected from spambots. You need JavaScript enabled to view it.) - support for adult patients, their access to treatment
Zdeněk Rejzek (This email address is being protected from spambots. You need JavaScript enabled to view it.) - active member, participation in international conferences and events