| At the end of December, 2018, we organized lectures together with the Red Cross from Gazi Baba, Skopje, in the following schools: VEra Jocikj, Naum Naumovski Borche, DAne KRapchev, Krum Tosev.
They got knowledge and information about how to better help and support families that face life with a rare disease or certain dysfunction.
What we noticed is that in each school there were 1 to 3 people connected to someone with a rare disease. There were a lot of questions and discussion and exchange of contacts so that we can help and support patients and families with rare diseases. We hope to continue this cooperation and have more events on raising awareness on rare diseases.
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It is a pleasure to inform everyone that starting January, this year through the Help line for rare diseases of LIFE WITH CHALLENGES we are providing psychological and psycho-therapeutic support for families with rare diseases.
The HELP LINE is a project that we started since 2013 as a non-formal info line for families that face life with rare diseases. It is an open communication through telephone, Viber, Facebook, e-mail, face to face meetings, family gatherings … and much more … the help line is for informative support, for direction and support through the health and social system so that patients can get the services they need without spending a lot of time through the institutions.
From January, 2019 we signed agreement for cooperation with NEOKORTEX – Center for psychotherapy, psycho-diagnostics, training and education so that we can offer the following services: individual psycho-therapeutic sessions, partner therapy, psychological advice for parents, family therapy, psychological testing and other services needed for the families that face life with rare diseases.
Statement, Vesna Aleksovska, President of LIFE WITH CHALLENGES:
“Supporting the patients in the past ten years, we became aware that psychological support is very important not just for the patients but also for their families. Having a rare disease is not just a burden to the one person that has it, but to the whole family. This is why we decided, part of grant form the Foundation Trajche Mukaetov, that we received at the end of the last year, to be for free psychological and psycho-therapeutic services for the families that face life with rare diseases. In 2019, patients and families with rare diseases can directly contact Ivana Hadzivanova from NEOKORTEKS (psychologists, psychotherapists, educator +38975273768), they can schedule a meeting and get the needed support. We hope that the availability of this service and the guaranteed anonymity will contribute towards greater help and support for the families with rare diseases and for the improvement of their quality of life. Although we are starting with this project in Skopje, we have planned educational workshops for other cities so that further we can start cooperation with other professionals and make a network of support for the families with rare “
Statement, Ivana Hadzivanova, Psychologist, psychotherapist, NEOKORTEKS
“It is a great honor and happiness for me to start this cooperation with LIFE WITH CHALLENGES as an organization that I respect a lot. I am ready in this year, to give all my professional energy in order to improve the mental health and the psychological condition of the people and the families with rare diseases. I am happy to be a part of the support in overcoming the life challenges when you face a rare disease.”
2019 is the year in which LIFE WITH CHALLENGES is marking 10 years of its existence. It will be a year with a lot of news and events and new services for improving quality of life of people with rare diseases. This is just a part of the news in the HELP LINE, soon, before Rare Disease Day, we will announce other news about services that will be provided through the HELP LINE in LIFE WITH CHALLENGES. But also we will have more news on regional cooperation with doctors and organizations from our region.
Vesna Aleksovska
President of the Association of citizens for rare diseases LIFE WITH CHALLENGES
Тel: +389 (0)70 70 54 46
E-mail: zivotsopredizvici@gmail.com
Information about the association:
- http://challenges.mk/
- https://www.youtube.com/user/lifewithchallenges
- https://www.facebook.com/LifeWithChallengesi
- https://www.facebook.com/groups/312483895490987/
- https://twitter.com/ZivotPredizvici
