A global awareness day for a rare life-threatening condition

On May the 16th HAE patient organizations from around the world, led by HAEi come together to support the global awareness day for HAE.

Dr Sijmen de Vries, Pharming’s CEO commented:

“We are proud to provide the first and only recombinant (C1- esterase inhibitor) protein replacement therapy for the treatment of acute angioedema attacks in adults and adolescents with HAE. Pharming has been collaborating with the HAE community since 2000. We are delighted to support this year’s hae day :-) and are dedicated to continue making a difference in patients’ and their families’ lives, working in close partnership with HAEi and its local affiliates.”

“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 hae day :-) are necessary in order to help patients receive faster diagnosis and care to manage the disease.”

As part of the awareness initiatives, HAEi introduces “Support Family Testing” tools on the organization’s campaign website www.haeday.org

“As HAE is an hereditary disorder, it is very important to have other family members tested. To help patients in this process we have developed two documents, one for patients and one for physicians”, says Henrik Balle Boysen.

HAEi is a global organization dedicated to raising awareness of C1 inhibitor deficiencies, as HAE patients have a defect in the gene that controls C1INH, and so the disorder is also commonly referred to as C1-inhibitor deficiency. HAEi is a non-profit international network of 55 national HAE patient organizations at present, spread across the globe.

“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.

The main symptom of HAE is swelling of the body tissues, which doctors call “edema”, occurring mainly in the face (e.g. lips, eyelids), although the extremities and genitals are often affected. Swelling of the internal organs, specifically the mucous membranes of the larynx, nose or tongue, is potentially life threatening as it can cause death by suffocation. More than 50 per cent of HAE patients will experience at least one attack of this type in their lifetime.

“Patients are frequently misdiagnosed because HAE symptoms often resemble those of more common conditions. Through 2017 hae day :-) 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.”

HAE places extraordinary strain on patients, often restricting their ability to lead normal lives. Untreated HAE patients can lose 100 to 150 workdays per year or more. Currently, there is no permanent cure for HAE, but treatment options are available to try and prevent attacks from occurring or to treat attacks when they do occur.

Various events are taking place across the globe in aid of the global awareness day. Internationally 2017 hae day :-) coincides with some 30 patients and supporters – many of who suffer with from HAE – from Africa, Europe, North America, and South America walking part of the historic Camino de Santiago in northern Spain 14-17 May 2017.

(Source: Pharming Group)

2017-05-31T19:25:10+00:00