On May 16th HAE patient organizations from around the world, led by HAEi (The international HAE patient organisation), come together to support the global awareness day for Hereditary Angioedema; a rare life-threatening condition. “haeday:)” aims to raise global awareness to ensure each and every patient receives faster diagnosis and the care they need to lead a healthy life.
Various events are taking place across the globe in aid of the global awareness day. HAEi arranges the HAE Global Walk 2018 from 1 April – 31 May 2018, allowing everyone to participate to walk for HAE awareness, no matter where they are on www.haeday.org.
The fourth HAE Global Conference will be held in Vienna, Austria on 18-20 May 2018. Around 700 HAE patients, their families, caregivers, healthcare professionals and industry representatives will be attending. Pharming is also supporting this event, which is the largest international gathering of its kind solely with a focus on HAE.
Dr. Sijmen de Vries, Pharming’s CEO commented:
“Pharming has been collaborating with the HAE community since 2000. We are delighted to support this year’s haeday:) and are dedicated to continue making a difference in patients’ and their families’ lives, working in close partnership with HAEi and its local affiliates.
As provider of the first and only recombinant (C1-esterase inhibitor) protein replacement therapy for the treatment of acute angioedema attacks in adults and adolescents with HAE, we provide the HAE community with a reliable source of blood-plasma free medicine and are dedicating significant research efforts to improve convenience and quality of life further, including investigations into the potential application of needle-free technologies.
On this day we wish everybody living with HAE and those caring for them the very best outcome for the future.“
“HAE is a rare genetic disorder that causes attacks involving swelling to various parts of the body, and can be fatal when the swelling affects the throat due to the risk of suffocation”, explains Mr. Henrik Balle Boysen, Executive Director of HAEi, the international patient organization, leading the day.
“Global awareness initiatives such as the haeday:) are necessary in order to help patients receive faster diagnosis and care to manage the disease.”
“HAEi has been established to promote co-operation, co-ordination and information-sharing between HAE specialists and national HAE patient associations to help facilitate the availability of effective diagnosis and management of C1 inhibitor deficiencies throughout the world. Our purpose is to join the efforts and experience of the global HAE community to achieve optimal standards of care and treatment for all those patients affected by C1 inhibitor deficiencies”, says Mr. Balle Boysen.
“Patients are frequently misdiagnosed because HAE symptoms often resemble those of more common conditions. Through 2018 haeday:) we hope to spread the word about HAE, so patients can receive an accurate diagnosis and appropriate medical care,” Mr. Balle Boysen explains: “We are very excited by the level of participation from the HAE national organizations across the globe and hope that the awareness day will make a real difference to lives of HAE patients in the future.”