Liang Jie is a young woman with a disease commonly known as "porcelain dolls", and her height is framed at 11 meter, the ability to walk also stays at three or four years old. However, despite her physical inconvenience, Liang Jie did not give up her pursuit of a normal life and work. She uses a customized wheelchair to travel, and at the same time actively participates in rare disease public welfare work to help more patients.
Liang Jie's story began when she was 18 years old, when she met volunteers from rare disease NGOs in the hospital and felt their love and help. Therefore, she decided to join a non-profit organization to help other "porcelain dolls" and patients with rare diseases.
During her time at this non-profit organization, Liang Jie prepared and managed a number of public welfare projects, helping patients obtain surgical funds and providing psychological counseling and other support. She also decorates her wheelchair with floral pieces to convey the positive concept of wheelchairs. She is extremely busy with her work, holding four or five meetings a day and typing more than 10,000 words.
However, Liang Jie is not satisfied with her existing job, she is seeking more possibilities and development opportunities. Eventually, she joined the Cord Center for Rare Diseases, hoping to provide patients with a more dignified social life by exploring solutions for rare diseases in China.
Liang Jie's story has received widespread attention and appreciation. Her strong and positive spirit has touched many people, and her work on rare diseases has also resonated widely. Her story has been commented on on many online platforms and social media platforms, praising her courage and dedication.
Liang Jie's story is similar to the experiences of some similar rare disease patients. They face physical difficulties, but they are still positive and optimistic in their pursuit of a normal life and work. The common denominator of these incidents is that these patients have created better living conditions for themselves and other patients through their own efforts, as well as the care and help of society.
Liang Jie's rare disease public welfare work has had a positive impact on society. She has improved the quality of life for patients with rare diseases by helping patients obtain funding for surgeries and providing support such as psychological counseling. Her story has also brought more attention to rare diseases and encouraged them to face difficulties and pursue their dreams.
Liang Jie's story has inspired many people, and her strong and positive spirit has given hope to other patients and those in need. Liang Jie's efforts and dedication in rare disease public welfare work have also aroused wide resonance, promoting social attention and support for rare disease patients. Her story teaches that no matter how difficult it is, if you maintain a positive attitude and work hard to pursue your dreams, you can definitely create a good life.
Is the phenomenon of rare disease porcelain dolls in Liang Jie's story widespread in society? Is there enough social attention and support for rare disease patients? Can we increase awareness and access to rare disease patients by increasing advocacy and education? How can the quality of life and dignity of rare disease patients be further improved?