Our Founders


Jolanta Bilińska –Director of Development and Social Communication at City Medical Centre dr. K. Jonscher in Lodz, lecturer at High School for Nurses in Kalisz, before at National Health Fund- Lodz, Head of the Department of International Cooperation.


Jolanta Bilińska has M.A. in Clinical Psychology. She  used to diagnose hospitalised children and teenagers with personal disorders. In early 90”s she started working for regional newspaper – DziennikŁódzki. She published almost 2000 articles concerning medical issues  and  politics.  She was mostly interested in matters relating to patients’ rights and the way they are observed in health care system. She also raised patients’ awareness of the health care system.


Since the year 2004 she has performed the function of coordinator concerning European Union in National Health FundinŁódź. Since 2005 she has been the champion leader in World Alliance for Patient Safety. In 2006 she established Patient Safety Foundation. Its main aim is to promote safety measures in health service as well as to involve patients in the process of treatment, The foundation cooperates with the Ministry of Health, WHO officer and another

non-governmental organization which are regarding patients’ matters. She is an expert in Public Health from 2009,she was also a IAPO chair of the board from 2015– 2018 (International Alliance of Patients Organizations).

Penney Cowan

In 1980 Penney Cowan founded and is CEO of the American Chronic Pain Association (ACPA). Ms. Cowan is a recognized speaker advocating a multi-disciplinary approach to pain management. She has been an outspoken advocate and consumer representative for pain issues, contributed to numerous books, videos and Websites, consulted on the development of several pain management programs, issues and received numerous awards from organizations, such as the Institute for Public Service, American Pain Society, and American Academy of Pain Medicine.


She served as Consumer Representative for the FDA/CDER Anesthetic and Analgesic Drug Products Advisory Committee (AADPAC); Interagency Pain Research Coordinating Committee (IPRCC) of the National Institute of Health; and Co-chair of the National Pain Strategies Public Education and Communication Working Group, part of the IPRCC.


Ms. Cowan is the author of Patient or Person, Living with Chronic Pain. She has also written all manuals and materials used by the American Chronic Pain Association. She successfully established September as Pain Awareness Month in 2001.


Karla Ruiz de Castilla is currently CEO of Esperantra, an advocacy non-profit organization based in Peru for patients with cancer and other chronic conditions. Karla has a master's degree in Economics and Administration from the University La Sapienza in Rome, Italy, and she has an HTA diploma from Piura University in Lima, Peru.


Karla has been collaborating with patients for more than 10 years to empower their voices and increase their participation in health system decision-making at all levels. Karla is driven by a strong belief in patient-centered medicine as a means to strengthen health care systems,and thus improve patient access to needed treatments and services. She is the founder of the Latin American Union


against Lung Cancer (ULACPUL), board member of the Ibero American Alliance for Rare Diseases (ALIBER), and member of the Union for International Cancer Control (UICC), organization that elected Esperantra as the first South American Country Champion.

Regina Mariam Namata Kamoga is an Executive Director, for Community Health and Information Network (CHAIN) for Uganda,an organization that promotes the empowerment of people living with,and affected by,HIV and AIDS and non-communicable diseases.

Ms. Kamoga has served on numerous health advisory committees and boards at the national and international level, and she is a past board member of International Alliance of Patients Organizations (IAPO) amongst others.

Ms. Kamoga works on patients’rights, particularly the rights of persons with HIV/AIDS,TB, malaria and non-communicable diseases, and capacity building for NGOs and community based organizations on governance and policy issues,health literacy and access. Ms. Kamoga’s work involves building and strengthening networks in collaboration with other organizations at the international, national and community level to address issues of patient safety and patient-centered healthcare.


Hussain Jafri is the founding Director of World Patients’ Alliance, a global patients alliance. He is also the Secretary General of Alzheimer’s Pakistan, the national association of Alzheimer’s disease and related dementiasth at Hussain founded in 1999 as are sult of his experiences as a caregiver for his grandfather with Alzheimer’s Disease. He has been very active in the field of patient safety and is currently the Vice Chair of Advisory Group of WHO’s Patients for Patients Safety Program (PFPS). Hussan in has also founded Pakistan Patient Safety Initiative and has been working towards several patient safety initiatives. The Government of the Punjab has also nominated him the Provincial Focal Person on Patients Safety & Quality and given the responsibility of developing patients safety and quality services in the health sector of the Punjab province.


He has remarkable experience of work in gas a volunteer in the social sector and has had an opportunity of working with government, national and international non-profit organizations. Hussain is also the former Chair of International Alliance of Patients'Organizations (IAPO).He is also a member of the steering group of the International Pain management Network. He is an experienced speaker and a resource person and has been presenting nationally and internationally on different issues like patient safety, patients centred healthcare,care giving,advocacy,partnership in health, organizational development,etc. Hussainisa PhD from University of Leeds, UK on prevention of genetic disorders. He is urrently workin gas the Deputy Project Director of Punjab Thalassaemia Prevention Programme and has published several publications in international indexed journals.

Andrew Spiegel has nearly two decades of experience in the patient advocacy arena. Spiegel co-founded the Colorectal Cancer Alliance, now the leading US based national patient advocacy organization dedicated to colon cancer. Mr. Spiegel, an attorney, besides being a co-founder of the organization and longtime board member of the Alliance became CEO in January of 2008 and he ran the CCA for nearly 5 years, before undertaking his next venture, the Global Colon Cancer Association (GCCA).


Currently, Spiegel is co-founder and executive director of the GCCA, an international patient advocacy organization. This organization is an international community of nearly 50 colon cancer patient advocacy organizations and stakeholders dedicated to end the worldwide suffering of the 3rd leading cause of cancer deaths.

In addition to his work in the colon cancer community, Spiegelis an active advocate for health care policies both in the US and now worldwide. He is a co-founder and currently serves on the steering committee of the Alliance for Safe Biologic Medicines (ASBM). He is on the Board of Directors, and in December 2014 was elected to Chair, of the Digestive Disease National Coalition (DDNC),a founding member of the Coalition to Increase Clinical Trial Participation and in May of 2016 he began a three year term as a member of the Board of Directors of the International Alliance of Patient Organizations (IAPO) where he chaired the fundraising committee. Spiegel has won multiple awards for his work in patient advocacy.

Spiegel is a 1986 graduate of Temple University in Philadelphia where he earned a Bachelor’s degree in Political Science with minors in English and Philosophy. He is a 1989 graduate of the Widener University School of Law. After working for a Philadelphia litigation firm, Spiegel opened his own law firm in 1995.