Let’s stay together! National Association of Young People with Connective Tissue Diseases (POLAND) was founded in 2008 by people who got ill in their childhood or youth, and now, as adults, they want to actively support young patients, children and young adults alike, and their families.
Our action is based on the volunteer work of members ? people who often themselves have been suffering for many years from the inflammatory diseases of the connective tissue. They know very well what problems and needs young patients and their families have, and what can be done to help them.
The aims of the Association are as follows:
- to bring closer patients withinflammatoryconnective tissue diseases in order to create a networkto exchange experiencesand provide supportin resolvingproblems associatedwith inflammatoryconnective tissue disease;
- to increase knowledge on theinflammatoryconnective tissue diseasesamongthe patients themselves, their parents, siblings,and the society as a whole;
- to prevent, overcomebarriers tonew informationregarding optional treatment for connective tissue diseases; and to improve accesstotreatments, rehabilitation equipment, rehabilitation camps,and orthopedic appliances;
- to facilitate thetransition frompediatrictherapeuticstospecialist treatmentfor adults,
- to assist in obtaining legal informationon disability.
The main areas of activity include the following:
- overcomingthe formal and social limitationsto the patient?s accessto appropriatetreatment, rehabilitation, education, and barriers to starting work, and getting involved in thesocio-cultural life,
- psychological supportfor patients and theirfamilies,
- organizingralliesand workshops, during which it ispossible toexchange experiences, meet interestingpeopleand gainknowledgeabout the disease,
- publishing actions,
- cooperatingwith local governmentsin the implementation ofstatutory objectives, as well as initiating andparticipatingin the legislative workconcerning disability.
Any questions? Contact us!