A Few Guidelines
Read through the following questions to share your hopes and expectations related to any of these aspects of life with a rare disease
Discrimination/Stigma/Exclusion – Have you ever felt excluded, discriminated, stigmatised either as a person living with a rare disease or as a family member/caregiver in any aspect or project of your life?
Additional costs/Financial Strain– Has living with a rare disease or caring for someone living with a rare disease impacted you economically? Do you face extra costs and expenses compared to other people?
Appropriate Care – Have you ever not received the right care for your disease or your needs? Like not receiving the medicines or health services you need or not having access to the social care or assistance that you need.
Education – Has living with a rare disease impacted you or the person you are caring for to access primary, secondary, high-level education or training? For example, because of non- adapted environments or timetables, barriers at school, lack of knowledge and information that creates exclusion.
Recreation – How has living with a rare disease impacted you or the person you are caring for to enjoy recreational activities (cultural life, sporting events, socialising etc.)
Employment – Has living with a rare disease or caring for someone with a rare disease impacted your ability to access work or stay employed? For example, because of non-adapted work environment or timetables, lack of understanding or flexibility from your employer.