NPO HAEJ
May 16th is HAE day! NPO HAEJ, an organization for patients with the rare disease HAE (hereditary angioedema), calls for better
understanding and awareness of HAE through HAE DAY light-ups at 22 facilities nationwide.
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May 16th is HAE DAY. Disease awareness campaigns are carried out every year around the world to increase understanding and awareness of the rare disease hereditary angioedema (HAE). HAEJ (hereinafter referred to as HAEJ), a Japanese HAE patient organization, is celebrating its 10th anniversary this year. HAEJ will also cooperate with the HAE DAY illumination of 22 facilities nationwide held on HAE DAY by the Hereditary Angioedema Diagnostic Consortium (DISCOVERY), in which HAEJ participates, to celebrate the 10th anniversary and promote disease awareness activities. .
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This year marks the 10th anniversary of the establishment of the NPO HAEJ (Representative Director: Makiko Matsuyama), which is a patient association for the rare disease hereditary angioedema (HAE). Up until now, we have been working to raise awareness and understanding of HAE on “HAE DAY” (HAE, Hereditary Angioedema Day) on May 16th every year. This year, we will be cooperating with DISCOVERY’s HAE DAY light-up, and will be working to make HAE widely known throughout the country. It is an unprecedented attempt to light up facilities all over the country at the same time to raise awareness about a rare disease. This “HAE DAY Light Up” event, which illuminates 22 facilities nationwide in HAE’s theme color “lavender purple,” was made possible by DISCOVERY’s call to local governments and commercial facilities across the country, and with their support. HAEJ, which is participating as a constituent member of DISCOVERY, has directors and management members of the association visit municipalities that have received support from Yokohama City, Kanagawa Prefecture and Kumamoto City, Kumamoto Prefecture, and visit local governments’ health and welfare officials and medical workers. We will conduct HAE awareness activities by holding discussions with people and walking events. In addition, in order to encourage more people to participate in the “HAE DAY Light Up” activity, we will ask people to take photos of lighted up facilities across the country that appear in the night sky, and share them with “#HAEDAY” and “#HAEDAY Light Up”. We will be asking people to post on social media with the hashtag “#Connect with HAE.”
[Image 2: https://prtimes.jp/i/142663/3/resize/d142663-3-1133aa3260728e683da2-1.jpg&s3=142663-3-4f1e0b2469a7d32386a95922156bacc3-720×1040.jpg] [Rare disease/issues surrounding HAE patients] HAE is a rare disease that affects 1 in 50,000 people and is characterized by swelling and pain in the limbs, face, lips, and abdomen.1) It is estimated that there are approximately 2,000 to 3,000 patients in Japan, but it is estimated that only approximately 450 patients are actually diagnosed and receiving treatment2). As the disease is not yet well known not only to the general public but also to medical professionals, many patients are currently not receiving appropriate care. [Message from HAEJ Representative Director] “HAEJ holds patient exchange meetings and provides the latest information in order to ensure that
undiagnosed patients are accurately diagnosed as soon as possible and to improve the treatment environment for HAE.” We are conducting various activities such as gathering and sharing, events to raise awareness, lectures, and research.On HAE DAY in 2024, which marks the 10th anniversary of HAEJ, we will be holding events all over the country. It’s a lot of fun to see the night sky illuminated with the theme color lavender purple, and it brings great hope to patients all over the country.We hope that more people will learn about HAE through the light-up campaign. Makiko Matsuyama, Representative Director [What is “HAE DAY”] In order to support patients with HAE and to improve awareness and understanding of HAE, May 16th is celebrated as “HAE DAY” (Hereditary Angioedema Day). To celebrate Angioedema Day, the HAE International Patients Association (HAEi) is holding various events and awareness-raising activities around the world. In Japan, HAEJ, the patient association of HAEi members, holds events such as the HAE DAY walk every year to deepen interactions. [“HAEDAY Light Up” activity summary] Sponsor: Hereditary Angioedema Diagnostic Consortium (DISCOVERY) Date: The following period including May 16, 2024 *Please note that the schedule may differ for some facilities. Illumination target: 22 facilities nationwide *Subject to change depending on the weather and facility conditions on the day. Please note.
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[Activities of NPO HAEJ in the first half of 2024] HAEJ is working on various initiatives to improve the treatment environment for HAE patients, including promoting early diagnosis of undiagnosed patients. The activity results and main activity schedule for the first half of 2024 are as follows. February 24th (Saturday) RDD held in Kobe (Hyogo) *Held as a Rare Disease Day (RDD, World Rare and Intractable Disease Day) event March 23rd (Saturday) HAE patient exchange meeting held in Sapporo May 11th (Saturday) HAE DAY Walking in Osaka May 16th (Thursday) Cooperation with HAE DAY Light Up (22 facilities
nationwide) and mini-event June 6th (Thursday) to June 9th (Sunday) Nippon Skin Exhibiting and speaking at the Scientific Society General Meeting (Kyoto) [About NPO HAEJ] NPO HAEJ helps patients and their families maintain a healthy daily life by interacting with hereditary angioedema (HAE) patients and exchanging information related to treatment. It was established in April 2014 to support people to live happily. As the NMO (National Member Organization) of HAEi (HAE international), an international patient organization, we work in cooperation with HAEi. For more information, please visit
https://haej.org/. 1) Longhurst HJ, Bork K. Hereditary angioedema: causes, manifestations, and treatment. Br J Hosp Med.
2006;67(12):654-657.2) Hide M, Horiuchi T, et al. Management of hereditary angioedema in Japan: Focus on icatibant for the treatment of acute attacks. Allergology International 70 (2021) 45-54. https://prtimes.jp/a/?f=d142663-3-5e219b6301f4107cfef32cfef11a31ca.pdf
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