Aim of the Project: advocacy and educational tools creation for people with pulmonary arterial hypertension and their relatives. Aim groups (patients) involvement in decisionmaking process, ensuring human rights for discriminated people group (patients with PAH).
Target group: 235 people with disabilities, their family members, staff of organization.
Indirect aim group: decision-makers, health care professionals, media and society.
Tasks: development of patient competence; create tools for advocacy in health care and social field that can be used in long-term; to promote social inclusion, reduce social discrimination, development of democracy.
Results: Innovative tools which the target group can use practically – brochure for people with rare diseases about health care facilities; advocacy plan; educational work-groups; presentation about every-day life for people with PAH; Positive video-book (videos with good experiences); seminar.
Place: Latvia.

Project results: The aim of the project is creation of an advocacy and educational tools for people with pulmonary arterial hypertension (PAH), their caregivers, and specialists, involving the target groups in decision-making process and ensuring respect for democratic values and human rights in general public.The project refers to very discriminative group – people with dangerous rare disease whose diagnose is not of the health cure compensation system of the Republic of Latvia.
The project goals are:
1) The target group involved in advocacy tools, promoting social inclusion and reducing social inequalities;
2) Innovative number of activities available in the long term for people with PAH and their carers increased by 4 units: the Booklet developed for people with rare diseases on the right to health care in Latvia and EU states. It was distributed in printed form to the direct target group: 162 patients with PAH, 112 caregivers (relatives, siblings), 3 specialists; and to other rare patient NGOs distributed 230 copies of the Booklet. We established PHA Latvia Advocacy Plan for the period of 2015-2018, Presentation “Breathe!” on people with PAH everyday life, shooted the Happy stories videobook, which had 2,144 views at PHA Latvia facebook page: see. https://www.facebook.com/phlatvia/?ref=hl.
3) 20 people with PAH and their caregivers participated in the Educational workshops “ABC of Equal Opportunities”, 8 target group representatives together with experts established the Advocacy Plan; 3 patients and one caregiver participated at the involvement of the Presentation” Breathe!”; 4 persons actively realized Happy stories videobook.
4) There were 2 informative events about the project – Press breakfast and Projects’ Conclusion workshop.
The project activities improved knowledge about target group social rights, contributed to social inclusion, reduced social inequalities, increased rare disease patients and their relatives understanding of health sector legislation, and the regulatory functions. During project, was developed of the target group competencies; created tools for advocacy in health care and social field that used in long-term.
As a whole at the activities of project was involved the direct target group: 162 people with disabilities and rare disease, 112 their caregivers, 3 experts, 5 employees – total 282 persons. Project involved participants from all regions of Latvia.