From October 3-21, 2022, HAE Junior, a Patient Worthy partner organization, will have its art exhibit on display in the halls of the Czech Parliament. HAE Junior is an advocacy group based in the Czech Republic that focuses on children living with hereditary angioedema, a rare disease.
The exhibit, titled “Stronger Than HAE” features artwork by HAE patients age 18 years or younger and their supporters. Submissions were accepted from around the world. The display in the Chamber of Deputies will serve as a reminder to lawmakers to consider the needs of rare disease patients; after all, these lawmakers will hold the power to make decisions that can have tremendous impacts for people living with rare diseases like HAE.
About Hereditary Angioedema (HAE)
HAE is a genetic disorder which is characterized by chronic episodes of swelling that can affect multiple areas of the body. The condition is caused by mutations affecting the SERPING1 gene. Swelling attacks generally occur every two weeks or so; they can usually last for several days. Swelling may affect the limbs, digestive tract, face, and airway, with blockage of the airway being the most dangerous complication. Vomiting and abdominal pain may accompany attacks as well if the digestive tract is involved. Treatment involves reducing the likelihood for attacks to appear and preventing them from worsening when they do. The condition is typically only life-threatening if left untreated. Prevalence of the condition is estimated to be around one in 10,000 to one in 50,000, at least in the US and Canada. To learn more about HAE, click here.
Inspired by Hope
The artists were encouraged to create pieces that were reflective of their hopes for the future, as well as aspirations to live fulfilling lives despite living with the illness. The exhibit also includes text descriptions that explain the exhibit itself, HAE, and the mission and goals of HAE Junior.
The display is set to coincide with the Czech Presidency of the Council of the EU.
Project partners include: Czech Rare Disease Association, Department of Immunology of the 2nd Faculty of Medicine at Charles University and Motol University Hospital, CSL Behring, Pharming NV, KalVista Pharmaceuticals, Takeda, Lekarna.cz, ExCEEd Orphan, the Association for Plasmapheresis, and Patient Worthy©.