This privacy notice provides you with details of how we collect and process your personal data through your use of our site or through our project activities.
By providing us with your data, you warrant to us that you are over 13 years of age.
The International Children’s Palliative Care Network (ICPCN) is the data controller and we are responsible for your personal data (referred to as “we”, “us” or “our” in this privacy notice).
We have appointed a Data Protection Officer who is in charge of privacy related matters for us. If you have any questions about this privacy notice, please contact the Data Protection Officer using the details set out below.
Full name of legal entity: The International Children’s Palliative Care Network
Name or title of Data Protection Officer: Julia Downing
Email address: info@icpcn.org
Postal address: Suite 1b, Whitefriars, Lewins Mead, Bristol, BS1 2NT, UK.
It is very important that the information we hold about you is accurate and up to date. Please let us know if at any time your personal information changes by emailing us at info@icpcn.org
Personal data means any information capable of identifying an individual. It does not include anonymised data.
We may process the following categories of personal data about you:
Where we are required to collect personal data by law, or under the terms of the contract between us and you do not provide us with that data when requested, we may not be able to perform the contract (for example, to deliver an effective and impactful programme). If you don’t provide us with the requested data, we may have to cancel your involvement in the programme, but if we do, we will notify you at the time.
We will only use your personal data for a purpose it was collected for or a reasonably compatible purpose if necessary. For more information on this please email us at info@icpcn.org In case we need to use your details for an unrelated new purpose we will let you know and explain the legal grounds for processing.
We may process your personal data without your knowledge or consent where this is required or permitted by law.
We do not carry out automated decision making or any type of automated profiling.
We may collect data about you by you providing the data directly to us (for example by filling in forms on our site or by sending us emails). We may automatically collect certain data from you as you use our website by using cookies and similar technologies.
We may receive data from third parties, eg analytics providers such as Google based outside the EU, advertising networks such as Facebook based outside the EU, search information providers such as Google based outside the EU, providers of technical, payment and delivery services, such as data brokers or aggregators.
We may also receive data from publicly availably sources such as Companies House and the Electoral Register based inside the EU.
We may have to share your personal data with the parties set out below:
Before we share your personal data with any third party for marketing purposes, we will get your express consent.
We require all third parties to whom we transfer your data to respect the security of your personal data and to treat it in accordance with the law. We only allow such third parties to process your personal data for specified purposes and in accordance with our instructions.
Countries outside of the European Economic Area (EEA) do not always offer the same levels of protection to your personal data, so European law has prohibited transfers of personal data outside of the EEA unless the transfer meets certain criteria.
Many of our third party service providers are based outside the European Economic Area (EEA) so their processing of your personal data will involve a transfer of data outside the EEA.
Whenever we transfer your personal data out of the EEA, we do our best to ensure a similar degree of security of data by ensuring at least one of the following safeguards is in place:
If none of the above safeguards is available, we may request your explicit consent to the specific transfer. You will have the right to withdraw this consent at any time.
We have put in place security measures to prevent your personal data from being accidentally lost, used, altered, disclosed, or accessed without authorisation. We also allow access to your personal data only to those employees and partners who have a business need to know such data. They will only process your personal data on our instructions and they must keep it confidential.
We have procedures in place to deal with any suspected personal data breach and will notify you and any applicable regulator of a breach if we are legally required to.
We will only retain your personal data for as long as necessary to fulfil the purposes we collected it for, including for the purposes of satisfying any legal, accounting, or reporting requirements.
When deciding the length of time to retain your data, we consider its amount, nature and sensitivity, potential risk of harm from unauthorised use or disclosure, the processing purposes, and whether these can be achieved by other means and legal requirements.
For tax purposes the law requires us to keep basic information about our supporters (including Contact, Identity, Financial and Transaction Data) for six years after they stop being supporters.
In some circumstances we may anonymise your personal data for research or statistical purposes in which case we may use this information indefinitely without further notice to you.
Under data protection laws you have rights in relation to your personal data that include the right to request access, correction, erasure, restriction, transfer, to object to processing, to portability of data and (where the lawful ground of processing is consent) to withdraw consent.
You can see more about these rights at:
https://ico.org.uk/for-organisations/guide-to-the-general-data-protection-regulation-gdpr/individual-rights/
If you wish to exercise any of the rights set out above, please email us at info@icpcn.org
You will not have to pay a fee to access your personal data (or to exercise any of the other rights). However, we may charge a reasonable fee if your request is clearly unfounded, repetitive or excessive or we may refuse to comply with your request in these circumstances.
We may need to request specific information from you to help us confirm your identity and ensure your right to access your personal data (or to exercise any of your other rights). This is a security measure to ensure that personal data is not disclosed to any person who has no right to receive it. We may also contact you to ask you for further information in relation to your request to speed up our response.
We try to respond to all legitimate requests within 40 days. Occasionally it may take us longer if your request is particularly complex or you have made a number of requests. In this case, we will notify you.
If you are not happy with any aspect of how we collect and use your data, you have the right to complain to the Information Commissioner’s Office (ICO), the UK supervisory authority for data protection issues (www.ico.org.uk). We should be grateful if you would contact us first if you do have a complaint so that we can try to resolve it for you.
Our website may include links to third-party websites, plug-ins and applications. Clicking on those links or enabling those connections may allow third parties to collect or share data about you. We do not control these third-party websites and are not responsible for their privacy statements. When you leave our website, we encourage you to read the privacy notice of every website you visit.
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ICPCN is a registered charity in England and Wales (number 1143712) and a registered company in England and Wales (number 7675172) ICPCN is also a registered company in South Africa (number 2011/001648/08) and a registered Public Benefit Organisation (number 930043272)
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Palliative Care Psychologist, Sant Joan de Déu Hospital, Barcelona, Spain.
Expert psychologist in psycho-oncology and palliative psychology – Pediatric Palliative and Complex Chronic Care Service, Sant Joan de Déu Hospital, Barcelona, Spain.
Passionate about this field, Dr. Daniel Toro Pérez has spent the past 10 years working with children and adolescents requiring palliative care, as well as with their parents and siblings. He holds a PhD in Health Psychology from the Autonomous University of Barcelona, where he conducted his doctoral research on the assessment of suffering in pediatric palliative care, contributing several publications on the topic. He also works as a lecturer in various university master’s and postgraduate programs and as a clinical simulation instructor focused on communication skills. He is also a Registered Nurse, with over 15 years of experience in oncology and palliative care, and holds master’s degrees in both pediatric and oncology nursing.
Associate Director, Sunflower Children’s Network, Two World’s Cancer Collaboration.
Dr. Spandana Rayala is the Associate Director of our Sunflower Children’s Network and the Assistant Program Director Fellowships for TWCC.
Dr. Rayala is a palliative care consultant at Kuwait Association for the Care of Children in Hospital and Bayt Abdullah Children’s Hospice. She is from Hyderabad, India and did her pediatric palliative care fellowship at MNJ Institute supported by TWCC starting in 2016.
Medical Director, HCA Hospice, Singapore.
Dr Chong Poh Heng is Medical Director of HCA Hospice in Singapore. After finishing his specialist training, he started its home palliative care arm for seriously ill children called Star PALS. An ardent advocate of CPC, he co-chairs with a Japanese colleague the Specialist Interest Group for CPC at the Asia Pacific Hospice and Palliative Care Network (APHN). His PhD focused on the attributes of a good death in children with life shortening illness. Education and mentorship are now keeping him busy within the domain of CPC.
Professor Pain and Palliative Medicine, MNJ Institute of Oncology, Hyderabad, India.
Dr. Gayatri Palat is Associate Professor, Pain and Palliative Medicine, at the MNJ Institute of Oncology and Regional Cancer Center in Hyderabad, India. She was instrumental in establishing the Department of Palliative Care within the Institute by developing clinical services, including outpatient, inpatient and home-based care and training programs.
Dr. Palat trained originally as an anesthetist and is a Diplomate of the National Board in Anesthesiology of India. She also has a Diploma in International Palliative Care Leadership from the Institute for Palliative Medicine, San Diego Hospice, in the United States.
At national level, she has played a key role in the amendment of opioid regulations in the state of Andhra Pradesh, India, working with the government and other stakeholders. She is a founder member and currently the Executive Secretary of the not-for-profit organization, Pain Relief and Palliative Care Society in Hyderabad, which provides home-based palliative care called ‘Life at your doorstep’, offering rural outreach, advocacy and training in palliative care.
Dr. Palat has also contributed to the development of the curriculum for the Indian Association for Palliative Care (IAPC) course on palliative care, and has been involved in opioid availability activities though the IAPC and the Pain and Palliative Care Society, Calicut (a WHO Demonstration Project). She facilitated the development of the Department of Palliative Medicine and the Diploma in Palliative Medicine, the first of its kind in the country, at Amrita Institute of Medical Sciences, Kochi. With a special interest in pediatric palliative care, Dr. Palat has played an important role in developing a unique pediatric palliative care fellowship program at MNJ Institute of Oncology and currently leads the Special Interest Group – Pediatric Palliative Care of the Indian Association of Palliative Care.
Internationally, through her involvement with the IAEA (International Atomic Energy Agency), Dr. Palat has participated in the initial planning of palliative care in the National Cancer Control Program for Sri Lanka, Indonesia and the Philippines. She is a director of the palliative care initiative in SE Asia of Two World Cancer Collaboration, the Canadian branch of International Network for Cancer Treatment and Research (INCTR), which works with healthcare professionals in resource-challenged countries to reduce the burden of cancer in South East Asian and African countries. She has also participated in the development of the EPEC-India curriculum to facilitate the implementation of palliative care in various institutions throughout the country.
Dr. Palat joined the IAHPC Board of Directors in 2010 and is currently serving a second term. She is particularly interested in advocacy activities related to improving access to opioid medications, and standardization of training programs in developing countries.
Founder and CEO, Cultura Paliativa. Co-ordinator, Grief in Schools Project (IPA Foundation).
Alejandro Nespral is a Pediatrician who has lived in San Carlos de Bariloche, Argentina since 2010. He specializes in palliative care for children and adults. He is the founder of the Palliative Care Team Service at the Bariloche Zonal Hospital since its inauguration in 2013, becoming the first public and private palliative care service in the region. He served as its head from its inception until November 2022. In 2015, together with a group of colleagues, he founded the Ideas Paliativas en Acción Foundation, an NGO dedicated to the promotion, dissemination, assistance, and education in the field of palliative care. One of the Foundation’s most notable projects is the play “Don’t Stop Talking to Me”, presented in 2017 and 2018 in both Argentina and Uruguay. In 2021, the Audio-visual Project Perspectives was launched.
Alejandro is the General Coordinator of the “Grief in Schools” Project (IPA Foundation), which since 2015 has provided training and reflection workshops for teachers and students on the topic of death and grief in education. This project also provides assistance, advice, and support to grieving educational institutions. Since its inception, more than 120 schools and social and community institutions in Bariloche, the rest of Argentina, and Uruguay have been supported. The project has been declared of cultural, social, and educational interest by the Municipality of Bariloche and the Ministry of Education of the Province of Río Negro.
The Grief in Schools Project also has a research team that has published scientific research articles related to the topic over the years.
In 2017, he was the President of the Local Committee of the IX Argentine Congress on Palliative Care, held in Bariloche, with the participation of more than 500 professionals from Argentina and neighbouring countries He is currently a member of the Editorial Committee of the EPEC Pediatric LATAM Project, a project aimed at training in Pediatric Palliative Care in Latin America.
In 2017, he was a TEDx Bariloche speaker, presenting the talk “Let’s Talk About Death with Children,” a talk selected by the TED platform in Spanish.
In June 2019, he presented his first book, Does Dying Hurt?, in which, through stories, he evokes part of his practice in palliative care. The book was presented in Bariloche and Buenos Aires, where it received a warm reception from both specialized and general audiences. The book, Does Dying Hurt? It was presented in Montevideo, Uruguay in October 2019.
In June 2022, he presented his second book, Dos Sillones (Two Armchairs), a collection of stories that blend fiction with autobiography, where themes such as health, illness, death, euthanasia, and grief come to life through stories and characters.
He dedicates part of her work to the dissemination and promotion of palliative care. |Article in the newspaper “La Nación” (Argentina) 2019| – |Article in the newspaper “El Cordillerano” (Bariloche, Río Negro) 2020|. He is an international speaker and regularly participates in conferences and events in Argentina, the Region, and Spain.
Alejandro is the Founder and current CEO of Cultura Paliativa, a platform that develops news, educational projects, and digital offerings related to the palliative care field in Argentina and the region.
Director of the St. Jude Global Palliative Care Program, St Jude Children’s Research Hospital, USA.
Dr McNeil is a combined Pediatric Hematology-Oncology and Hospice and Palliative Medicine physician at St. Jude Children’s Research Hospital and the Director of the St. Jude Global Palliative Care Program.
His clinical and research focus is on defining the current state of palliative care in underserved communities throughout the world and driving improvement interventions to relieve suffering of patients and families facing the challenges of pediatric cancer through culturally sensitive projects in education, implementation, and advocacy. This research is in conjunction with his clinical time in pediatric oncology and hospice and palliative medicine implementing evidence-based practices to advance cures and reduce suffering for children with cancer around the world.
He has an incredibly patient wife who puts up with him and they have 4 active and entertaining boys. They are his world.
Social Worker and Child Life Specialist, Moi Teaching and Referral Hospital, Eldoret, Kenya.
Elizabeth Kabuthi is a medical social worker and Certified Child Life Specialist working in Moi Teaching & Referral Hospital, Shoe for Africa Children’s Hospital, as the program coordinator of the vibrant Sally Test Child Life Program (STCLP) in partnership with AMPATH.
Pain and Palliative Care Clinical Nurse Specialist, American University of Beirut, Lebanon.
Janane Hanna joined Balsam in 2010 as one of its founding team members. Janane holds a Master’s degree in Nursing from the American University of Beirut and has received training in pain and palliative care at a number of leading centers including Johns Hopkins University Hospital, MD Anderson Cancer Center, St Christopher’s Hospice and Al-Malath Foundation. After 5 years as an oncology nurse at AUBMC, she became the first Pain Nurse at AUBMC in October 2010. In 2011, she received her Advanced Oncology Clinical Nurse Specialist (AOCNS) certification from the Oncology Nursing Certification Corporation and was promoted to Pain Clinical Nurse Specialist in July 2012. In 2016, she was appointed Academic Associate at the AUB Hariri School of Nursing. Janane is very active in the field of pain and palliative care. She is a member of the Subcommittee on Practice of the Lebanese National Committee for Pain Control and Palliative Care. She played an important role in establishing the hospital-based palliative care service at AUBMC. Her local efforts have won her international recognition. She has been elected as a member of the American Society for Pain Management Nurses Pain Outcome Metrics task force. Janane is committed to improving pain management practices through the education and training of physicians and nurses at AUBMC as well as other institutions both nationally and internationally.
Clinical Professor of Paediatrics, University of Alberta, Canada and Argentina.
Dr Daniel Garros is a Brazilian-Canadian, Clinical Professor of Pediatrics, Dept of Pediatrics, Division of Critical Care, Faculty of Medicine and Dentistry and Clinical Professor of the John Dossetor Health Ethics Centre, University of Alberta.
He is a senior attending the Stolley Children’s Hospital Pediatric Intensive Care Unit (PICU) for more than 25 years. He is the Quality & Safety lead in PICU and a member of the Critical Incident Stress Management (CISM) team. Dr Garros research includes Moral Distress, End of Life Care, the impact of COVID-19 pandemic on family presence in the PICU, from Professionals and Familie’s perspectives. He frequently lecutes on Health Care professionals’ well-being, Palliative Care in the ICU setting, Moral Distress and Moral Injury. He regularly volunteers with Non-Governmental Organizations (ONGs) that provide cardiac surgery care for children in South America and the Caribbean. Dr Garros is a father of 3 young adults, and he likes to spend his time playing soccer, fishing and biking.
Palliative Care Specialist, Balsam – Lebanese Center for Palliative Care, and Centre Hospitalier Public d’Hauteville, France.
Dr El Khoury was drawn to Palliative Care after he discovered how powerful and underused the available tools are and how much they can change the experience of the disease and its impact on the whole family. He is particularly interested in providing care and support not only to the patients but also to their families who live through the different stages of their loved ones’ illness and have to deal with loss and grief.
Education Manager, International Children’s Palliative Care Network, South Africa.
Alex Daniels is an experienced children’s palliative care nurse and educationalist. She has a Masters in Paediatric Palliative Care from the University of Cape Town. She has been working in paediatric palliative care since 2007, initially facilitating bereavement training workshops, and then as a clinician and trainer in paediatric palliative care. Alex has been working with ICPCN as their Education Officer since 2017, running their e-learning programme and teaching on face-to-face courses, webinars and workshops on paediatric palliative care. She has experience in developing new courses and is involved in education internationally.
President, The Ruth Foundation, Philippines.
Dr Mae Corvera is a Family Medicine and Palliative Medicine Specialist and founder of The Ruth Foundation. She advocates Palliative Care in the community level through the foundation. In spite of her busy schedules, and multiple ‘hats’ she wears, she makes sure that her three kids and her husband are happy.
Chief Executive, International Children’s Palliative Care Network.
Professor Downing is an experienced palliative care nurse, educationalist and researcher. She is the Chief Executive of the International Children’s Palliative Care Network (ICPCN) and a Professor at Makerere University, Uganda. She has extensive experience in Global palliative care, research and education, and is on the editorial board of ecancer, APM and the IJPN. She has been working within palliative care for over 30 years, with more than twenty of those working internationally in Uganda, Africa, Eastern Europe and globally developing palliative care for both adults and children. She works closely with the WHO and recently Co-Chaired the development of the WHO Guidelines on balanced national controlled medicines policies to ensure medical access and safety.
Professor Downing serves on the Boards of several NGOs including the Worldwide Hospice and Palliative Care Alliance (WHPCA), the International Society of Nurses in Cancer Care (ISNCC), ehospice, and the African Palliative Care Association UK (APCA UK), and is an Advisor to the International Association of Hospice and Palliative Care. She is a Visiting Professor at the University of Belgrade. She is also a Senior Honorary Research Fellow with the Cicely Saunders Institute at KCL, and an Honorary Senior Fellow at the University of Edinburgh. She was awarded an Honorary Fellowship at Cardiff University and was the recipient of the IJPN’s Development Award in 2006, the ISNCC Robert Tiffany lectureship in 2014, the Pearl Moore “Making a Difference” International Award for Contributions to Cancer Care from the ONS in 2015 and was recognised as one of eight ‘Change Agents in Cancer Care’ in a publication on Women as Change Agents in Oncology in 2016.
When not working in palliative care, Julia is a musician and is involved in running a music school in Kampala, and various local choirs and orchestras. She is also the Director of Music at her local church.
WHO Consultant for Palliative Care, World Health Organization, Geneva.
Dr Megan Doherty is a WHO consultant for palliative care, based in Geneva. She is a children’s palliative care specialist, originally from Ottawa, Canada. Throughout her career she has worked in wide variety of settings globally, developing clinical palliative care services and training programs. While serving on the executive committee of PallCHASE, she worked to establish models of palliative care suitable for humanitarian settings in Asia and Africa. Dr. Doherty has been involved with the development and implementation of Leadership and Education programs through her work as the Pediatric Palliative Care Program Director of Two Worlds Cancer Collaboration. She is passionate about developing programs to mentor and support children’s palliative care leaders globally.
Professor in Childhood Cancer and Palliative Care Epidemiology Outcomes, Queensland University of Technology and Cancer Council Queensland.
Natalie Bradford is a Professor in Childhood Cancer and Palliative Care epidemiology outcomes, in a conjoint position with Queensland University of Technology and Cancer Council Queensland. She is also Director of the newly funded NHMRC Centre of Research excellence in Paediatric Palliative Care. Natalie holds a PhD and Masters in Public Health and has decades of clinical and research experience in cancer control and palliative care in children. Her research program explores the use of technology to improve outcomes at the individual, service and systems level of health, across the continuum of care in hospitals, homes and communities.
Professor of Quality of Life and Pediatric Palliative Care, Stanford University, USA.
As a Palliative Care physician leader and visionary (AAHPM awards); Pediatric Oncologist; and Phase I and Palliative and End– of– Life Care Clinical Investigator, Dr Baker is intimately aware of the distress experienced by children with advanced illnesses and the ethical and end–of–life/bereavement issues surrounding their disease progression. He currently serves as the Inaugural Chief of the Division of Quality of Life and Pediatric Palliative Care here at Stanford, as well as the Director of the Quality of Life for All (QoLA) Program. Additionally, he serves as the Associate Chief Quality Officer for Patient Experience and Holistic Care. In his past career at St Jude Children’s Research Center, he started the St Jude palliative care program, created two home-based pediatric palliative care teams and served as the director of the Pediatric Hematology/Oncology Fellowship Program for more than a decade.
His research expertise is in the study of innovative models of palliative care, grief and bereavement, patient-reported outcomes, and pain and symptom control. He has received significant extramural funding for his research and has participated in >100 studies related to pediatric palliative care. He is also deeply committed to training up the next generation and to mentorship. He has mentored/co-mentored more than 60 post-docs, fellows, and junior faculty members. He has authored >300 academic works on palliative care subjects.
He has received many awards for his work including the prestigious Hastings Center Cunniff-Dixon Award. He was also named an American Academy of Hospice and Palliative Medicine (AAHPM) Inspirational Leader in Hospice and Palliative Medicine. Most recently Dr Baker was named an AAHPM Visionary in Hospice and Palliative Medicine.
He is a recognized international expert and leader in the field of Pediatric Palliative Care as well as a highly sought-after speaker (see TEDxMemphis talk) and mentor with a track record of success.
He has been married to his college sweetheart (beautiful Monny from Monterrey, Mexico) for more than two decades and they are proud parents of four incredible children. An interesting fact about Dr Baker is that he likely has more stuffed koala bears than any other individual on the planet and has even had a koala bobblehead of him created. He also has numerous koalas “adopted” in his name.