The 16th Annual International FAP Conference

【International Communication】The 16th Annual International FAP Discussion and Communication Conference

The 16th Annual International FAP (Familial Amyloidotic Polyneuropathy) Discussion Conference was held from March 26 to March 29 at Kumamoto City in Kyushu, Japan.  This event attracted over 750 participants, including doctors, scholars and patients, from 39 countries, such as China, Taiwan, Canada, the United States, the United Kingdom, the Netherlands, Sweden, Portugal and Korea. The day before the event, the Japanese FAP Association and the Convention held a special gathering for patients. They invited all FAP participants as well as FAP organizations from their countries to share their personal experiences concerning this disease and contribute the knowledge of new treatment.

The symposium began with two neurologists from Kumamoto University Graduate School of Life Sciences, who gave a brief introduction of the disease, the circumstances of Japanese FAP patients and the diagnosis along with treatment of FAP. Following this, genetic counselors came to share experiences in taking care of patients. In addition, the event organizer introduced FAP associations from Japan, Sweden and Taiwan and other related groups to come forward and share information. Besides publicizing the disease, FAMY Association, from distant Sweden, also actively raised funds for clinic research. As for TFRD, we gave an introduction on care service for patients. Family members of Taiwanese FAP patients also shared their internal struggle of facing their loves having FAP and their expectations (e.g. new treatments, possible cure).

Owing to the conference, we could understand the difficulties and the desires of patients with FAP. Regarding the disease, all the patients from the 39 countries hoped that there would be not only more medical professionals but the public would know more about FAP. Furthermore, a patient who was present raised this issue: due to relatives’ and friends’ ignorance and unfamiliarity with the disease, FAP patients were rudely stared at. Speaking of this upsetting experience, the patient choked with sobs. Another patient inquired for advice on how to set up a patient association, which showed the necessity of group support for the patients.

Although the conference was brief, the experience of interacting with foreign countries was quite valuable. The meeting was ended up with “The Song of The Patient: I Love My Body,” performed by a Netherlandish patient, appealing to all patients to love themselves, accept their illness, and forge ahead with hope and love within their hearts.

Translator: Rachel (Wilson's disease), Reviewer: Nicky