Best Memories to Our Close Friend, Pam Faith Eisen

At the beginning of our foundation, instead of merely focusing on domestic patient services, we also kept contact with international rare diseases organizations for latest information such as designated orphan drugs, long-term care experience, 
management of rare diseases, and advocacy for rare disease patients' rights. 

Amongst many friends from different international organizations, Ms. Pam Faith Eisen, president of International Prader-Willi Syndrome Organization (IPWSO), has been helping us and PWS patients in Taiwan by generously sharing with us IPWSO’s experience on patient services. 

Pam and Janelee Heinemann, executive director of PWSA, paid a 6-day visit to Taiwan in 2003. During their visit, they shared international trends on caring and treating PWS patients and helped us to provide more suitable medical care to PWAS patients. Furthermore, Pam and Janelee also visited the manager of National Health Insurance, Mr. Chen-Hua Lee for the reimbursement of the growth hormone for PWS patients.  In 2005, Pam and Janelee visited Taiwan again and had several talks with PWS patients and parents, medical professionals in Taipei, Taichung and Hua-Lien, to promote understanding of PWS, hand out information, and answer many questions from parents.  Their experience on residential homes for PWS patients helped patients and their parents in Taiwan understand that there’s a possibility that adult PWS patients can live an independent life.  

However, Pam, who was a relentless and devoted worker for PWS management and care, was diagnosed with cancer in early 2008. During her battle with cancer, she continued to work for a better future for PWS patients. She had arranged a Trust for IPWSO which will enable people with financial difficulties to attend the international conferences. But on November 19th, Pam quietly slipped away, leaving her family and friends in sorrow. Our board director, Dr. Shuan-Pei Lin, who is also the vice president of IPWSO, attended the celebration in memory of Pam held in Harrisburg, and dedicated our thanks to Pam. She will always lives in our hearts.