Famcare Board

Verena Gutmann

Chair

Educational Head of Department  responsible for the Educational Management of 100 youngsters from 14-20 years. Also responsible for the formation of the Austrian PWS Association and  chairperson for 10 years. Verena was an auditor for IPWSO before joining the board.  She has a daughter with PWS living in the  Regens Wagner Institution in Absberg /Bavaria/Germany. Verena was an IPWSO Trustee from 2016-2022.

Susanne Blichfeldt

Consultant (Neuropediatrics). Susanne has an adult son with PWS. She is also a member of our Clinical and Scientific Advisory Board.

Karin Clarke

Karin Clarke is the Chairperson of the Prader-Willi Syndrome Support Group of South Africa.  She graduated with a Bachelor’s degree in economics and psychology from the University of Cape Town (UCT).  She worked in Marketing Research, at Kantar TNS until her daughter with PWS was 2 years old. In 2011 when her daughter was four years old and was finally diagnosed with PWS she joined the PWS Association of South Africa. In 2015 she started the Facebook page for PWS SA and became more involved. In 2017 she became the Chairperson and the structure was changed to a support group under Rare Diseases SA (RDSA).   She works with RDSA as a rare ambassador for PWS.  The three main areas of focus for the support group are support, education and advocacy.   The core form of support is the WhatsApp group due to the large geographical distances in South Africa.  Due to the very low levels of diagnosis of PWS elsewhere in Africa families from other southern and central African countries are welcomed to join PWS SA as there are no support groups for PWS in southern and central Africa.   Connections are being made through Rare-Africa (also predominantly run by RDSA) to educate on PWS elsewhere in Africa. Karin has been a co-opted Trustee of IPWSO since 2022.

María Elvira Garcia Ronderos

María Elvira was born in Bogotá, Colombia. She is an Industrial Engineer, and specialised in finance and organisational development and is also a Practitioner in Neurolinguistic Programming. She worked for 33 years in different sectors of the economy. She wrote the book “The Smile Thief”, published in 2017, which is the testimony of a family with a special child. She has been married for over 40 years to Mauricio Sánchez with whom she has four children; the youngest, Carlos Iván, has Prader-Willi syndrome. She has been President of the Asociación Colombiana Síndrome de Prader-Willi since 2019. María was part of the organising committee of international symposiums on PWS in Colombia in 2019 and 2021.

Liane Motta

Liane lives in Brazil with her daughter with PWS who was born in 2014. With a background in journalism, translation, and book editing, Liane has used her skills to connect and empower families across Brazil. Under her leadership, the Brazilian PWS Association expanded to support over 500 families. Liane offers heartfelt, first-hand insight into the everyday realities and long-term outlook for families raising children with PWS. She speaks both Portuguese and English, bringing an international, parent-focused voice to this important conversation. Liane has been an IPWSO Trustee since 2025.

Elizabeth Oyenusi

Dr Elizabeth Oyenusi is an Associate Professor (with focus on general paediatrics/paediatric endocrinology & metabolism) in the College of Medicine, University of Lagos and an honorary consultant Paediatrician/Paediatric Endocrinologist to Lagos University Teaching Hospital, Lagos, Nigeria. She has obtained the MBBS degrees, fellowship of the Postgraduate College in Paediatrics, MSc (Paediatric Emergency Medicine-Edinburgh) and fellowship of the European Society for Paediatric Endocrinology. Her research interests include glucose metabolism, childhood obesity, diabetes, disorders of puberty, rare diseases and genetic syndromes (such as Prader-Willi, Beckwith-Wiedemann, and others) growth & development, amongst others. She is the current President of the African Society for Paediatric and Adolescent Endocrinology (2024-2026) and the assistant coordinator/local tutor at the Paediatric Endocrinology Training Centre for West Africa, Lagos, Nigeria. Dr Oyenusi has authored over 58 peer reviewed publications. She has also been involved in writing management guidelines for paediatric endocrine disorders nationally, regionally and globally.

Marina Wetzel

Marina Wetzel studied educational science and special needs education in early childhood. She works as a scientist at the School of Social Work at the University of Applied Sciences and Arts Northwestern Switzerland. Her work focuses on social pedagogical family support and interventions in early childhood. She has a school-age son with PWS.

Honorary President

Board of Trustees

Staff

Advisers

Clinical and Scientific Advisory Board

Professional Providers and Caregivers Board