Implication of NGO^s in Implication of NGO^s in education of patients with rare education of patients with rare diseases and general diseases and general populationpopulation

Mihai Gafencu, MD, PhD, Save the Children - RomaniaMihai Gafencu, MD, PhD, Save the Children - Romania

IntroductionIntroduction

In the absence of a governmental strategy for rare In the absence of a governmental strategy for rare diseases in the 18 years after 1990, the most neglected diseases in the 18 years after 1990, the most neglected group of diseases in Romania, the social inclusion of these group of diseases in Romania, the social inclusion of these children remains to the private initiative of NGO’s. children remains to the private initiative of NGO’s.

The new approach include reduced direct state The new approach include reduced direct state involvementinvolvement and searched for alternative sources of and searched for alternative sources of funding with a wider participation of the non-governmental funding with a wider participation of the non-governmental sector, involving other social actors sector, involving other social actors

Aim of our work was to focus on the changes in life quality Aim of our work was to focus on the changes in life quality of children with these diseases, after a teamwork and a of children with these diseases, after a teamwork and a multidisciplinary approach.multidisciplinary approach.

In our NGO partnership (a branch of In our NGO partnership (a branch of a national NGO – Save the children a national NGO – Save the children Romania and another local one) we Romania and another local one) we worked together with 32 children worked together with 32 children and youngsters affected with 5 and youngsters affected with 5 different rare diseases. different rare diseases.

They participate from 1999 in a Club They participate from 1999 in a Club organized by young volunteers from organized by young volunteers from our organizations.our organizations.

Patient Support Groups and their Patient Support Groups and their young members representing 5 rare young members representing 5 rare genetic disorders, guide other genetic disorders, guide other patients, families through the patients, families through the appropriate healthcare appropriate healthcare

Together!Together!

How?How?

Smiling together!

Singing together

Games, exercising

together

With parents in the back, gaining skills together

Playing games together

Playing games together for developing attention and logic thinking !!!

Celebrating Celebrating ChristmasChristmas

togethertogether

Making Making Soul Soul friendsfriendstogethetogetherr

Making Making Life Life time time friendsfriends

togethertogether

Working Working togethertogether in Team building programs in Team building programs

Making trips together

ResultsResults

Children have interacted with volunteers and benefited Children have interacted with volunteers and benefited by becoming more assertive and by achieving more by becoming more assertive and by achieving more developmental targets.developmental targets.

Assessment of their progress might establish the exact Assessment of their progress might establish the exact role of communication among the Club (parents, role of communication among the Club (parents, volunteers, other children). volunteers, other children).

The parents have witnessed important cognitive and The parents have witnessed important cognitive and behavioral changes in their children, facts that at this behavioral changes in their children, facts that at this moment are our method of evaluating their progress.moment are our method of evaluating their progress.

Together!

The health of people with disability and the social The health of people with disability and the social integration can be improved if they have every integration can be improved if they have every opportunity to enjoy family life, education, opportunity to enjoy family life, education, friendship, access to public facilities and freedom of friendship, access to public facilities and freedom of movement. movement.

Action should be aimed at counteracting Action should be aimed at counteracting helplessness and stigmatization. helplessness and stigmatization.

We provide expertise and experience in a We provide expertise and experience in a community organization, which the government community organization, which the government services do not possess, as well as increase the services do not possess, as well as increase the delivery of community-based primary health care.delivery of community-based primary health care.

ConclusionsConclusions

TOGETHER

Thank U all!

TOGETHER!