The event began with a thought-provoking introduction led by our Malaysia team, which asked the audience a thought-provoking question: “If your child or loved one were diagnosed with a rare disease, how would you cope with the emotional and practical challenges of supporting them?” This question set the tone for the discussions that followed, inviting participants to reflect on the emotional weight that rare disease families carry every day. This approach was designed to encourage attendees to step into the shoes of those affected by rare diseases, sparking meaningful engagement and introspection.

 

Following this impactful opening, our Shanghai team took the stage to provide more in-depth information about rare diseases, focusing on the realities faced by patients and their families. The team shared stories from their own experiences, recounting the journeys of several patients whom Sails of Hope has supported. These personal stories highlighted not only the medical challenges but also the emotional resilience and strength displayed by those battling rare conditions.

 

A Memorable Postcard Exchange

 

As the event drew to a close, we hosted a special Postcard Exchange activity, which became a highlight of the day. Each participant was given a postcard and invited to write a personal message of encouragement and hope for rare disease patients. The idea behind this activity was simple yet profound: words of compassion and solidarity can bring light into the lives of patients who often feel isolated by their conditions.

 

The messages participants wrote were heartfelt and thoughtful. Some expressed well wishes for the patients’ recovery, while others acknowledged the courage it takes to face daily challenges. Several participants also shared their admiration for the strength and resilience of both patients and their families. Once written, the postcards were collected and will be sent directly to the rare disease patients that Sails of Hope supports, bringing a tangible touch of hope and care into their lives.