PWS China has recently joined IPWSO, we asked them to tell us a bit about their work and mission:
Prader-Willi Syndrome Care & Support Center, China
Since 2017 the Prader-Willi Syndrome Care & Support Center (China) has supported people with PWS in the following four aspects.
1. Raising public awareness for PWS
We aim to promote early diagnosis and timely medical interventions so as to improve quality of life for PWS individuals.
We have launched 256 awareness campaigns at medical conferences in 51 cities, delivered keynote speeches on “What is Prader-Willi syndrome (PWS)” at 41 medical conferences and distributed around 150,000 copies of brochures. We have also invited medical experts to hold 45 webinars.
We have collaborated with over 100 hospitals, such as The Children’s Hospital Zhejiang University School of Medicine, Shandong Provincial Hospital and The Second Hospital of Hebei Medical University, to make November 15th as Prader-Willi Syndrome Day in China.
2. Facilitating Policy Advocacy
We facilitate the inclusion of PWS treatments and medicines into the catalog of special diseases (outpatient) of national health care services, aiming to alleviate financial burdens of PWS individuals and families. We advocate that China Disabled Persons’ Federation offers support to people with PWS and their families.
Through our efforts, PWS treatments and medicines have been included in the coverage of governmental medical insurance in Hunan, Sichuan, An Hui provinces, Huai’an city of Jiangsu province and Linyi city of Shandong province.
3. Fostering research and cooperation
We aim to cooperate with PWS organizations in other countries, gain access to and share latest information on treatment from home and abroad.
- We have invited 31 professionals, including academicians of the Chinese Academy of Sciences, doctoral supervisors at top universities (university principals) and experts from home and abroad to be our medical consultants.
- We have organized 30 doctor-patient conferences, collaborating with hospitals, such as Peking Union Medical College Hospital, The Children’s Hospital Zhejiang University, which benefited 1,008 families.
- Over 100 PWS experts at 92 hospitals have opened up “green channel” for PWS individuals.
- We have organized 11 WeChat (instant message app) groups where experts offer free online medical counselling services.
- We have facilitated the establishment of PWS Collaborative Team at Chinese Medical Association and alliance of standardized PWS treatments.
- We have facilitated the implementation of “PWS Designated Clinic Project” sponsored by Chinese Red Cross Foundation in 218 hospitals. Through this project, PWS children under 2 can receive growth hormone treatment for free over a period of 6-12 months. Families in need can also apply for financial aids.
- We have helped organize clinical trials for several PWS medicines and fostered research on genetic therapies.
4. Setting up PWS care homes
We started a care home for PWS individuals back in 2018, providing a living space without food temptations. Through balanced diet and effective physical exercise, 49 children/teenagers with PWS have lost weight and improved their health significantly.
The best case was a 17-year-old girl, whose weight dropped from 113.5 kilograms to 60 kilograms within 12 months. More impressively, her health indicators became normal. Before moving in, the individual’s fasting blood sugar level was above 16mmol/L, which required daily exenatide injection to cure diabetes. At the care home, her blood sugar level had been dropping gradually to the normal level within a month. Exenatide was no longer needed in the second month. Even diabetic foot complications had disappeared.
Awards:
1. Best Association Awards of the Year 2019 and 2021 host by Chinese Organization for Rare Diseases.
2. Our projects: ”Give PWS Individuals a Home” and “Saving Hungry Angels” stood out as two of the 720 projects selected from 110,000 projects that were awarded by Tencent Charity Foundation on “99 Charity Day”.
3. “Outstanding Innovation Project Award” in the 2020 Rare Disease Public Welfare Innovation Competition” host by Beijing Illness Challenge Foundation.
4. “Best Good-Deed Doer” in 2020 Public Welfare Film/Video Festival.
5. Our promotional video “Wanderer in the Universe” received over 10 million clicks on Tencent platform, 1.8 million clicks on Weibo. The video also won the “Best Creativity” award in 2020 Tencent Advertising competition, the “Best Innovation” award in the sixth Shanghai Short Film Festival, the “Best Film” award in the 10th China Public Welfare Festival and “Audience Choice” award host by Tencent.
Our Mission: to raise public awareness of PWS, to set up care homes for PWS individuals, to foster an inclusive, equal, respectful social environment for PWS individuals.
Our Vision: Every PWS individual can be cured.
Core Values: Every PWS individual’s life has meaning and each one of them deserves love.
Our Goals:
- Enhance public awareness and understanding of PWS community.
- Avoid misdiagnosis and ensure early diagnosis, timely interventions and accurate treatments.
- Maximize access to policy, medical and therapeutic resources.
- Alleviate burdens on PWS families.
- Improve public understanding of PWS community.
- Foster inclusive, diverse, harmonious and respectful social environment.
- Conduct research on PWS community.
- Enhance benefits of PWS community in areas such policy, medical care, education and social welfare.
For more information visit their website: http://www.xpwilli.org/
