NORD staff members Marsha Lanes, MS, Certified Genetic Counselor, Mary Dunkle, Stefanie Putkowski, RN, and Tai Spargo with Yukiko Nishimura at the NORD offices in Connecticut 

A representative of the Japanese Patient Association and PRIP Tokyo, a rare disease research foundation, visited the NORD offices in Danbury, Connecticut, Nov. 26 to talk about global collaboration among rare disease patients and advocates. This was the second time in recent months that Yukiko, a long-time associate of NORD, has visited the Connecticut offices to discuss possible areas of collaboration.

One such area is Rare Disease Day, for which NORD serves as the national sponsor in the U.S.  Rare Disease Day provides an opportunity to send messages of solidarity and support to each other from across the world. This year, we will share updates on their Rare Disease Day projects to highlight how Rare Disease Day is celebrated in Japan. This video, soon to be shared in English, gives a glimpse of the some of the previous Rare Disease Day activities.

Additionally, in the coming month we will explore other ways we can work together to help patients. Globalization and the Internet are changing how patients can interact with each other.  (One example of this are the disease-specific global communities that NORD and EURORDIS co-sponsor at RareConnect.org.

NORD and PRIP Tokyo/JPA share many goals and feel strongly that we need to play a role to facilitate the global conversation and strengthen patient connection. There is a lot we can learn from each other, and we look forward to continuing these conversations of collaboration and friendship.