Rare Disease Association Executive Summit

Given the scarcity of rare disease patients and the complexity of their conditions, finding help when faced with problems can be challenging. This makes it even more crucial for them to interact and network with each other. Over the years, TFRD has been dedicated to promoting the development of rare disease patient groups. On January 20, 2012, TFRD organized the Rare Disease Association Executive Summit at the Rare Disease Welfare Center (RDWC), with a total of 42 participants representing 16 groups and their families.

At the onset of the event, the representatives immediately connected like old friends, exchanging insights about their respective organizations' operations and strengths. Engaging in group discussions and mutual dialogues, the representatives had the opportunity to reassess the ideals and expectations of their patient support groups.

In the afternoon, Ms. Hung, Deputy Executive Director of the TFRD, delivered a speech on "The Role of Rare Disease Patient Groups in Securing Coverage for Rare Drugs under Medicare." Following her address, the discussion centered on suggestions and cooperation strategies for the effective operation of patient groups. As times, lifestyles, and mindsets evolve, TFRD recognizes the need to stay current in its organization, outreach, and engagement activities. TFRD extends its heartfelt gratitude to all the partners serving as organizers and representatives of patient groups, who have supported numerous patients through periods of anxiety and sorrow. We hope that the insights gained today will enhance the organization's operations and serve as a source of strength for every family affected by rare diseases.

Translator: David Lee (Becker Muscular Dystrophy)