七色堇 (Seven Petal Pansy): China Joins World Duchenne Organization
We are excited to announce that 七色堇 (Seven Petal Pansy) from China is now a full member of the World Duchenne Organization. They are on a mission to improve the lives of those affected by rare diseases, including Duchenne Muscular Dystrophy (DMD). Seven Petal Pansy aims to strengthen the global Duchenne community through collaboration and resource exchange.
Fan Zhang is a representative of Seven Petal Pansy. She expressed their enthusiasm about the partnership. “We discovered the World Duchenne Organization while searching for resources to support our Duchenne community. After contacting WDO and experiencing fruitful communications, we realized that working together would be immensely beneficial for both organizations.”
As a full member of WDO, Seven Petal Pansy is committed to facilitating communication and exchange of information. Their goals include medication and food accessibility, education and advocacy, and outreach and collaboration. By doing so, Seven Petal Pansy aims to support generations affected by Duchenne.
Seven Petal Pansy key departments:
Within their organization, Seven Petal Pansy has outlined three key departments:
- Medication/Food Accessibility: Enhancing access to currently unaffordable medication and food for the Chinese rare disease community through establishing purchase channels and enabling financial support.
- Education and Advocacy: Providing educational materials, guidance, and support to patients and professionals. Organizing activities to raise public awareness of rare diseases and translating important Duchenne care videos into Mandarin.
- Outreach and Collaboration: Connecting and collaborating with various resources, including professionals, foundations, organizations, regulatory agencies, and pharmaceutical companies, to serve the rare disease community in China.
Already, Seven Petal Pansy China has made significant strides in education by establishing an informative website, collecting suggestions, and organizing events such as online seminars and conferences. They have also actively advocated for rare disease awareness and facilitated medication accessibility for families with DMD.
Seven Petal Pansy aims to become a comprehensive service platform that supports rare-disease-affected individuals in China, enhancing their quality of life. By joining forces with WDO, we are positive they are well-positioned to achieve this vision.
