Shire has launched an awareness website for hereditary angioedema (HAE) as part of its Me, Not HAE campaign.
The site allows patients with HAE to share inspirational stories and messages and online wishes shared between 16 and 30 were added by the company as a leaf to a virtual HAE Wish Tree (see above).
Emmanuel Dulac, head of the rare disease business Unit at Shire, said: “Shire is dedicated to raising awareness of HAE and recognises the importance of sharing inspirational messages and stories as a way to encourage and show our support for those living with this challenging condition.”
A rare and life-threatening genetic condition, HAE affects about 1 in 10,000 to 1 in 50,000 people, with symptoms including unpredictable swelling in various parts of the body including the extremities, face, abdomen and upper airways.
Anthony Castaldo, president of advocacy organisation the International Patient Organization for C1 Inhibitor Deficiencies (HAEi), said: “People living with HAE often feel isolated, so sharing personal stories and messages of hope will help unite the community and strengthen its collective voice.
“This new site not only offers visitors the chance to learn more about HAE, but to also contribute messages of hope for the community in support of HAE day.”
