Lovexair Foundation will host an Instagram Live with parents of children with respiratory rare diseases, on Monday February 27th at @lovexair due to International Rare Disease Day #ShareYourColours
Meri and Joan (Spain), parents of a 10-year-old girl with Alpha-1 antitrypsin deficiency (Spain); Monica (Peru), mother of a 6-year-old boy with Cystic Fibrosis; and María (Colombia), mother of a 3-year-old girl with Pulmonary Hypertension will participate in this online event to share their testimony and experience living with a Rare Condition. Migdalia Denis will host the online event.
The Instagram Live will address the main challenges and questions that arise among mothers, fathers, and caregivers in general, at the time of receiving the diagnosis of a minority disease: the emotional impact, the process of acceptance of the disease, doubts and fears about the prognosis and management of the condition, the search for support and reference groups, the need for advice and follow-up from the professional team, the implementation of changes in habits or lifestyles, the management of information about of the disease with other members of the family, the school and the immediate environment, among other issues that affect these families in their day to day.
Fundación Lovexair is a non-profit organization dedicated to provide care support and guidance to people with respiratory diseases, their families and caregivers.
Our goals are to create awareness in society about the importance of early diagnosis, prevention and treatment of respiratory diseases and bring meaningful solutions to key stakeholders to improve peoples’ quality of life.
