Newsletter

Dear IPTA Members,

As the year draws to a close, I want to take a moment to reflect on our progress. In October, we held a productive in-person council meeting, resulting in numerous action points aimed at enhancing IPTA’s activities and making our society even more appealing to professionals in pediatric transplantation.

In November, we successfully conducted our first Virtual Education Symposium, thanks to the outstanding engagement of the IPTA Education and AHNP committees. This event provided a remarkable learning experience for physicians and many other transplant professionals, with over 200 participants joining us across all sessions —an achievement we look forward to potentially repeating in non-congress years. The recordings from the IPTA VES are available to IPTA members in good standing.

VIEW RECORDINGS - DAY 1

VIEW RECORDINGS - DAY 2

Nominations are open for IPTA Council. We are looking to elect a President-Elect and a Secretary-Treasurer to the Executive Council, as well as 5 new Council members, to join take up these roles in September 2025. Please think about who you would like to nominate for these important positions, and click below to apply.

CLICK HERE TO SUBMIT YOUR NOMINATION

Planning for the 2025 IPTA Congress -- www.ipta2025.org -- is well underway, and the Program Committee has selected many of the plenary and SOTA speakers, promising an exceptional experience in Berlin, Germany.

Nominations for the IPTA Society Awards (Distinguished Allied Health Professional, Future Leader in Transplantation, and Lifetime Achievement Award) are also open. These awards are distributed at Congress. This is your opportunity to honour those who you believe have made a real impact in the field of pediatric transplantation. Please click below to visit our awards page for more information and to nominate.

VISIT THE AWARDS PAGE

As the holiday season comes around once again, we ask you all to dig deep and consider donating to IPTA! Every little helps. Please click below to donate.

DONATE TODAY!

Wishing you all a wonderful holiday season!

Warm regards,

Dr. Lars Pape
IPTA President

IPTA Community Updates

Kidney Transplant Community of Practice
Submitted by Tom D. Blydt-Hansen, IPTA Kidney Community Chair

The IPTA kidney community of practice is a diverse group of medical, surgical and allied health professionals from around the world who seek to engage in improving the care of children living with a kidney transplant. This is a grass-roots community that is open to anyone who self-identifies with an interest in knowledge exchange related to clinical management, innovation, knowledge translation and advocacy.

This community was launched in July 2024, and since then there have been 3 meetings together in total with more than 20 participants. We plan to have regular meetings every 2-3 months going forward.

We seek to create a collaborative environment to share new ideas and to develop new programs. These ideas come from the members who have attended, and we are excited to see some of them starting to take shape in the form of systematic reviews led by members of the community. Other ideas have included development of standard protocols, webinars/education opportunities, advocacy initiatives, research initiatives, journal clubs and case-based forums.

The word is just starting to get out to the broader IPTA community! We look forward to recruiting many new members. To join, please send your information to IPTA’s Section Manager, Katie Tait at Katie.tait@tts.org

Liver Transplant Community of Practice
Submitted by Jean Botha, IPTA Liver Community Chair

The IPTA liver transplant community of practice is a collaborative group of healthcare professionals, including transplant surgeons, pediatric hepatologists and allied health professionals who are dedicated to advancing knowledge, skills, and best practices in the field of pediatric liver transplantation. This community, which started meeting once a month from mid 2024. fosters a shared commitment to improving patient outcomes through evidence-based care, innovation, and multidisciplinary support. We are engaging in regular discussions, sharing case studies, and exploring ideas for joint research. Currently members of this community address complex cases, share treatment protocols and real world experiences. As the community grows we hope to be able to develop guidelines for the society as well as position statements, ultimately with the goal of improving the quality of life for children undergoing liver transplants and their families. We welcome participation in the liver community, which is open to all IPTA members.

Thoracic Transplant Community of Practice
Submitted by Jonathan Johnson, IPTA Thoracic Community Chair

The IPTA pediatric thoracic community of practice is a collective group of healthcare professionals aiming to improve the lives of children who may need or have undergone pediatric heart, lung, or heart-lung combined transplantation. We welcome anyone with an interest in connecting with other professionals in this field (including but not limited to thoracic transplant surgeons, pediatric cardiologists, pediatric pulmonologists, nurses, advanced practice providers, pharmacists, social workers, and ethicists).

We started meeting in the Summer of 2024, with plans to host regular meetings leading into an in-person connection point at the 13th IPTA Congress in Berlin in September 2025. The community is designed to be grass-roots, with ideas and priorities arising from the membership. We hope to ultimately share cases, participate in position statements and guidelines, join advocacy initiatives, and partner with other institutions and organizations to advance our field. The community is open to all IPTA members - to join, please send your information to IPTA’s Section Manager, Katie Tait, at Katie.tait@tts.org, and we will ensure that you are included in upcoming calls!

Infectious Diseases Community of Practice
Submitted by Marian Michaels, Daniel Dulek and Hayley Gans
IPTA ID Care Committee and Community

The current IPTA ID CARE Committee has several projects in process that we believe will be useful to all IPTA members including an update on preventive strategies for Influenza, Respiratory Syncytial Virus and SARS CoV-2 as well as a paper examining the infectious diseases that specifically target our adolescents and teenage patients. This latter project is in collaboration with our Allied Health Colleagues. In addition, current members have joined forces with prior members to develop a Transplant Infectious disease Community of Experts (ID-COE). This group developed to maintain the wealth of knowledge, expertise, and guidance of former members of the ID CARE community. Several COE projects are in various stages of completion. Two have recently been submitted to Pediatric Transplantation and are under review, including a guidance document for mitigating the infectious risks of asplenic transplant recipients and a second one documenting results of an IPTA survey examining the range of preventive strategies against Toxoplasma gondii. In addition, a poster presentation was well received at the American Transplant Congress looking at liver transplant centers’ perioperative prophylaxis strategies. A fourth project is in the works developing scenarios of tuberculosis that are clinically relevant for pediatric SOT candidates and recipients.

While these projects are a wonderful start for the ID COE, but we know there are more members with ID interest out there.

Accordingly, we invite IPTA members with a particular interest in infections to come forward so we expand the ID COE, share ideas and thoughts on what would be helpful to you as IPTA members and to our patients and transplant centers.

If interested, please send us:

Name
Email address
Current Position
Area of infectious disease interest

Membership Communications Committee Update

Submitted by Joshua Gossett and Lyndsey Grover, Co-Chairs
IPTA Membership Communications Committee

The IPTA Membership and Communications Committee is an engaged group of multidisciplinary individuals from all over the globe, including members from Australia, Japan, Hong Kong, USA, and Spain. It is our mission to help connect and activate new and existing members in IPTA and the larger pediatric transplant community.

In 2024-2025, we have set a goal to hit over 1000 IPTA members through expanding membership into different geographical areas, as well as into different clinical disciplines that have been previously underrepresented.

We plan to achieve this goal through membership incentive programs, community word of mouth, and heavily pushing IPTA’s social media presence on multiple platforms. IPTA has long been a presence on X (formerly Twitter) as well as LinkedIn. We have recently decided to close our Facebook account in favour of newer and more active platforms. We have created a new Instagram account and are reposting news from IPTA on that platform, and we will be starting a campaign in Dec 2024 that will highlight IPTA Heroes and Legends through video vignettes that are currently in production from our committee members and during our IPTA leadership committee meetings.

Who are you and what do you do?

Joshua Gossett, United States
Stanford Children's Health
Lucile Packard Children's Hospital Stanford

Who are you and what do you do?

Lorraine Hamiwka, Canada
Associate Professor, University of Calgary
Child Health & Wellness Researcher, Alberta Children's Hospital Research Institute
Pediatric Nephrologist, Alberta Childrens Hospital

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Allied Health and Nursing Professionals Committee – Case Study

Submitted by Jenny Prüfe on behalf of the IPTA Allied Health Nursing Professionals Committee

Dear IPTA Members,

Please see the below contribution about a wonderful program offered by some of our AHNP members:

Ederhof is a rehabilitation centre located in Stronach, East Tirol, Austria, in the heart of the Dolomites. We provide inpatient care for children, adolescents and young adults with organ failure (including metabolic disorders) and after solid organ transplantation. In our centre we apply the concept of Family Oriented Rehabilitation (FOR). The aim of FOR is to view organ failure not as an individual disease with limited organ function, but as a multifaceted chronic condition that affects the whole family and impacts not only on physical, but also on mental and social well-being. Therefore, our programme does not only address the patient-child, but also the core family, including parents and siblings. With our multidisciplinary team, we aim not only to treat the underlying medical condition, but also to address psychological needs such as worry, stress or siblings feeling neglected, and to help cope with social and emotional effects such as challenges at school and work, financial difficulties, loss of social contacts and feelings of alienation.

Families attend our centre for four weeks and stay with the same group of peers and families throughout their stay. Our aim is to create a safe space where participants can relax by reducing the daily medical stressors. At the same time, we help to build new confidence and strengthen social bonds through relaxing yet activating outdoor experiences such as hiking, gardening, forest bathing (Shinrin Yoku) or art therapy and crafts. In addition, we offer a range of therapies (e.g. occupational therapy, counselling and physiotherapy), medical workshops (e.g. medication, adherence, transition, exercise, nutrition) and schooling to provide as much knowledge, care and relief from everyday stresses as possible, and to encourage self-help and self-care.

As all participating families have been affected by solid organ failure and/or transplantation, they share experiences that are essential to their biographies and connect with each other, creating a unique experience for each participant.

In addition to our main programme, we also offer special courses for adolescents and young adults alone to ease the transition, as well as for families with babies and toddlers to address their special needs. And I should not forget to mention our winter rehab programme, where we aim to incorporate winter sports such as sledging, skiing and ice skating into our sensory motor training and activities.

At the Ederhof we have six areas of responsibility working together:

The medical team (doctors and nurses)
The therapeutic team (physiotherapy, occupational therapy, massage, dietician and nutritionist)
Education (kindergarten, school, sports and adventure)
The kitchen
Housekeeping
Administration

At the moment our team consists of 32 members, but for specific workshops or excursions we can hire freelancers who are motivated to work with us and our patients and families to facilitate these extra activities.

Looking back, many things come to mind. First of all, we are proud of the continued existence and success of the project. It started in 1992 as an idealistic dream of the retired and renowned transplant surgeon Prof Dr Rudolf Pichlmayr. He saw the need for a special rehabilitation programme that was child-friendly, family-oriented, and that gave hope and compassionate support. Today, the Ederhof is unique in Europe and has over 30 years of experience and stories to tell - a remarkable achievement for a non-profit organisation.

It is in these stories that the individual achievements are to be found. Every member of the team - present and past - has their own personal story to tell or experience to share. What these experiences have in common is that we can see how our contributions are helping children and families through some of the most difficult times in their lives. To be able to continue and develop this meaningful work is the achievement of which we are most proud.

First of all: Go and do it! Working with chronically ill children - in our case, organ failure and transplantation - is a very unique job that needs to be done as a team. No matter which part of our team you work with, we all share the same responsibility to the patients and their families; our success depends on every single member of the team. This cannot be stressed enough! The children who come to our centre often have complex needs and may be living in a complex situation that requires very attentive and thorough care. And yet - and this is the important part - they are still children! If you're going to work in an area like ours, it's very important to be aware of this and to treat them as children: They may be sick and have been through a lot in their young lives, but they have the hopes, dreams and aspirations of children.

Few things are as rewarding as helping a child eat for the first time after being tube-fed; or seeing a bunch of children running around laughing, knowing that just a few months ago they would have been in hospital and possibly bedridden. Sick or not, children are children and they deserve to be happy! Working in our field means making this possible, without forgetting the proper care.

Sometimes it takes a vision and then the courage to make it a reality. We have the opportunity to develop new ideas and integrate novel approaches into established therapeutic settings. We have the chance to see children thrive and do things they never thought possible. Bringing families together in a setting like ours gives everyone new insights and perspectives. Having fewer than 40 'guests' at a time allows for good social interaction between participants. No one would be better able to understand the concerns of domestic violence than those who have experienced it. And perhaps no one can allay the fears of life after transplantation better than those who are living it.

And not to be forgotten, the location of our centre, surrounded by mountains and surrounded by nature, allows us to provide state-of-the-art medical care in a "The Sound of Music"-like setting.

Few things are as rewarding as helping a child eat for the first time after being tube-fed; or seeing a bunch of children running around laughing, knowing that just a few months ago they would have been in hospital and possibly bedridden. Sick or not, children are children and they deserve to be happy! Working in our field means making this possible, without forgetting the proper care.