On 14-15 October in St Petersburg, heads of patients’ organizations from 48 regions of Russia met in order to tackle key issues of their work: medication support, development of the healthcare system for adult patients with CF, public activity of the organization and effective collaboration with authorities and sponsors. The event was attended by 70 people.
Representatives of regional patients’ organisations from the Voronezh region, Perm krai and Saratov region shared their experience of cooperating with the authorities and the results of their work performed as part of the consumer protection council.
The majority of those present took active part in the discussion, shared their experience and working solutions, asked the experts questions and together sought ways to fulfil particularly difficult regional tasks.
During the School on 15 October, the participants also discussed the non-profit administration issues, including legal aspects, advertisement and PR tools, opportunities for patients’ organizations to cooperate with the Ostrova Foundation in order to improve the assistance provided to patients in the regional perspective. Another interesting report on how this protracted disease and its treatment influence patients and their families was delivered by Olga O. Poletaeva, medical psychologist and consultant.
Practical workshops were dedicated to two main themes: Difficulties of building a dialogue with partners: doctors, officials, parents, sponsors, and Writing letters and appeals.
Organizers:
Interregional Public Organisation Helping CF Patients;
OstrovaCharitable Foundation