H20 Initiating and setting up a patient advocacy group for huntington’s disease in hungary

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Abstract

Background and aims

It is very challenging to face and live with a chronic disabling disease like Huntington’s. During the disease course from asymptomatic phase of well being and sattled circumstances the evolutioning signs of intractable hyperkinetic movements and cognitive decline many times could lead to social isolation and loss of work. The marginalization, lack of curative treatment wears even the toughest ones. A patients support group can play help in the process of handling the diagnosis, finding the best solutions regarding medical care, navigating in the maze of insurance and social approvals, denials and appeals, dealing with the frustration of all the hopeless situation uprising one after another. Our aim was to initialize the establishment of an advocacy group for Huntington’s disease.

Methods

We conducted extensive and persistent research to find a person agrees with the goals of a patient support group but also willing to act and become a launcher establishing a patient advocacy group (PAG) for Huntington’s disease.

Results

We succeded after three years of continous effort on setting up a patient advocacy group for Huntington’s disease and the ‘Hungarian Huntington Society’ a PAG for Huntington’s disease was established and began to work.

Conclusion

PAGs are organisations supporting and helping people with different kind of diseases giving a hand in a great variety of aspects and problems patients have to face. In a chronic, progressive disabling disease like Huntington’s we realized the need of such an organisation, therefore made continous effort initiating and catalyzing one that turned out to be fruitful at the end.

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