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Speaker Information

Gap Introductions & Strategic Priorities

Day 1: Wednesday 13th America (EST) 3:30pm-3:40pm | Wednesday 13th Europe (GMT): 8:30pm-8:40pm | Thursday 14th Asia Pacific (AEDT): 7:30am-7:40am

PKU ASSEMBLY: Creating a pathway for global access to treatment and care

Day 2: Thursday 14th America (EST) 8:30am-9:00am | Thursday 14th Europe (GMT): 1:30pm-2:00pm | Friday 15th Asia Pacific (AEDT): 12:30am-1:00am

GAP's PKU World Assembly Forum - Summary & a call for participants

Day 2: Thursday 14th America (EST): 9:00am-9:10am | Thursday 14th Europe (GMT): 2:00pm-2:10pm | Thursday 14th /Friday 15th Asia Pacific (AEDT): 1:00am-1:10am

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PKU dad, co-founder and President, Canadian PKU and Allied Disorders; co-founding trustee and board chair, Global Association for PKU. John is a seasoned managment consultant and passionate patient advocate. He volunteered ten years on the board of the Canadian Organization for Rare Disorders and chairs the Best Medicines Coalition of 29 Canadian patient organizations. He is a well-regarded commentator and analyst of the Canadian health care system as a Senior Fellow of the Macdonald-Laurier Institute, a non-partisan think tank. He lives in Canada and Mexico.

SSIEM PKU Scientific Updates

Day 1: Wednesday 13th America (EST) 3:40pm-4:30pm | Wednesday 13th Europe (GMT): 8:40pm-9:30pm | Thursday 14th Asia Pacific (AEDT): 7:40am-8:30am

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Anita INWOOD, Ba Nurs, Grad Dip Paeds, MNP

Director, Queensland Lifespan Metabolic Medicine Service, Service Group Director of Neurology and Metabolic Medicine,Queensland Children's Hospital, Brisbane, Australia

Associate lecturer, University of Queensland, Brisbane Australia

Anita Inwood has been A paediatric nurse for 34 years, working in metabolic medicine since 2003. A Churchill Fellow in 2012 and a Nurse Practitioner from 2015, and adjunct lecturer at the UQ. Anita is the Director of the Queensland Lifespan Metabolic Medicine Service and the Service Group Director of Neurology and Metabolic Medicine. Her clinical portfolios are PKU, FAOD and hypoglycaemia

Liver In A Dish: "Revolutionizing PKU Treatment through Stem Cell and Gene-Editing Therapies."

Day 1: Wednesday 13th America (EST) 4:30pm-4:40pm | Wednesday 13th Europe (GMT): 9:30pm-9:40pm | Thursday 14th Asia Pacific (AEDT): 8:30am-8:40am

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Dr Kiryu Yap is a clinician-scientist. His clinical practice focusses on surgery, particularly surgical oncology, general (including gastrointestinal/liver) surgery, and oncoplastic surgery. He is also highly active in research, and leads a basic science laboratory program focussing on the use of stem cells, bio-engineering and gene-editing approaches to develop new human bio-engineered tissues in the laboratory which can be used as replacement tissues in transplantation. Concurrently, Dr Yap holds honorary positions at the University of Melbourne Department of Surgery, and the School of Medicine at The University of Adelaide and The University of Western Australia. He is also Board Director of LiverWELL, a Victorian patient advocacy and support organisation focussing on liver health and disease.

PTC 923 (sepiapterin) & Jnana Therapeutics trial updates - Australia

Day 1: Wednesday 13th America (EST) 4:40pm-5:05pm | Wednesday 13th Europe (GMT): 9:40pm-10:05pm | Thursday 14th Asia Pacific (AEDT): 8:40am-9:05am

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Dr Drago Bratkovic is a paediatrician, metabolic physician and clinical geneticist who received training in both metabolic medicine and clinical genetics through the Children’s Hospital at Westmead in Sydney and the Women’s and Children’s Hospital in Adelaide. He took on the position of Head of the Metabolic Clinic in 2008 after completing his specialist training in 2006. Dr Bratkovic’s clinical and research interests include the use of array technology in cytogenetics, enzyme replacement therapy, newborn screening and the investigation of patients with autism.

QoL review on pre and post Kuvan in the paediatric population

Day 1: Wednesday 13th America (EST) 5:05pm-5:15pm | Wednesday 13th Europe (GMT): 10:05pm-10:15pm | Thursday 14th Asia Pacific (AEDT): 9:05am-9:15am

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Catherine Atthow has been a member of the specialist metabolic nursing team within the Queensland Lifespan Metabolic Medicine Service for over four years. Prior to this, she worked in the Babies Ward at Queensland Children’s Hospital. Catherine has completed a Bachelor’s degree with distinction in Nursing through the Queensland University of Technology and both a Bachelor’s degree in Psychology and a post graduate degree in acute clinical care through The University of Queensland. Currently, Catherine is completing post graduate study in grief counselling and is involved in research with both the Queensland phenylketonuria patient cohort and undiagnosed mitochondrial patients.

Sheila Jones 2023 Winner - A Case Study on PKU Humanitarian Support

Day 2: Thursday 14th America (EST) 7:30am-7:50am | Thursday 14th Europe (GMT): 12:30pm-12:50pm | Thursday 14th Asia Pacific (AEDT): 11:30pm-11:50pm

Update on European/Mid East Access to Foods & Treatment crisis - "State of the Nation"

Day 2: Thursday 14th America (EST) 7:50am-8:00am | Thursday 14th Europe (GMT): 12:50pm-1:00pm | Thursday 14th Asia Pacific (AEDT): 11:50pm-12:00am

PKU ASSEMBLY: Creating a pathway for global access to treatment and care

Day 2: Thursday 14th America (EST) 8:30am-9:00am | Thursday 14th Europe (GMT): 1:30pm-2:00pm | Friday 15th Asia Pacific (AEDT): 12:30am-1:00am

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Deniz Atakay was born in 1972 in Eskişehir Air Hospital and pursued a career in aviation as a flight attendant. When she became an « Anne », she described that moment as her world came crashing down upon receiving the news of her baby's PKU (Phenylketonuria) diagnosis in 2001. A metabolic disorder that requires a strict low-protein diet for life that endangers the mental health of the child.

After conducting extensive research on PKU, in 2005, Atakay founded the first Family Association in Turkey, which aimed to provide support and resources for families affected by the condition, to help individuals with PKU survive a postpartum drop of blood test and maintain their social healthy life. She was named "Mother of the Year" in the same year and played a pivotal role in establishing PKU Family Associations in other provinces.

Since 2009, she is the delegate of Turkey for the European PKU Association/European Society for PKU. In 2012, Atakay represented Turkey as one of six Olympic torchbearers at the Olympics in London. In 2017, she was named one of the founding members of the World PKU Association/Global Association for PKU (GAP), serving as the representative of Turkey and the Middle East.

As an advocate for PKU patients, Atakay writes articles under the name of "Empathy" on the Habertürk - HtHayat Portal. She has also authored a book based on her real life "Zekâm Senin Elinde Beni Dogru Besle (My Intelligence is in Your Hands, Feed Me Right )" which is used as an auxiliary textbook in some universities. The book has been translated into numerous languages.

She actively participates in the "Disabled Child Rights Network" (EÇHA) and conducts training seminars, university projects. She also continues to raise awareness and promote advocacy for rare diseases through her active projects in the "Rare Diseases Network" in Turkey which she founded, where their ultimate goal is to improve the quality of life for individuals with rare and special diets and refugee children with rare diseases.

Atakay also works as a motivational speaker represented by Indeks Communication Agency.

Update on South/Central America's Access to Foods & Treatment crisis - "State of the Nation"

Day 2: Thursday 14th America (EST) 8:00am-8:30am | Thursday 14th Europe (GMT): 1:00pm-1:30pm | Friday 14th Asia Pacific (AEDT): 12:00am-12:30am

PKU ASSEMBLY: Creating a pathway for global access to treatment and care

Day 2: Thursday 14th America (EST) 8:30am-9:00am | Thursday 14th Europe (GMT): 1:30pm-2:00pm | Friday 15th Asia Pacific (AEDT): 12:30am-1:00am

GAP's PKU World Assembly Forum - Summary & a call for participants

Day 2: Thursday 14th America (EST): 9:00am-9:10am | Thursday 14th Europe (GMT): 2:00pm-2:10pm | Thursday 14th /Friday 15th Asia Pacific (AEDT): 1:00am-1:10am

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Mexican, from Jalisco the land of the Tequila and Marichi, married with Paty Camacho, lawyer and father of two youn girls Daniela and Sofia, Sofia has PKU.Founder and presidente since 2011 of PKU Mexico, and actually Vicechair of GAP (Global Association for PKU).

Update on South/Central America's Access to Foods & Treatment crisis - "State of the Nation"

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Cristian is the dad of a 23 years old PKU lady. He started working with PKU families in 2002, launched “PKU Argentina” and created the first PKU website in Spanish. He moved to Toronto Canada in 2004 looking for better treatment and care for his daughter. In 2008 I co-founded CanPKU, was Chair of the Board and currently working as the IT Manager. Cristian is passionate about helping the PKU community in Canada and Latin-America, and he is also a funding member, trustee and secretary of The Global Association for PKU (GAP).

Update on South/Central America's Access to Foods & Treatment crisis - "State of the Nation"

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Dr. Paula Vargas is a pediatrician, responsible for the Phenylketonuria service at the Hospital Materno Infantil Presidente Vargas in Porto Alegre (RS).

The Inspiration Behind A Lifetime Dedicated To PKU Advocacy

Day 3: Monday 18th America (EST): 3:30pm-4pm | Monday 18th Europe (GMT): 8:30pm-9pm | Tuesday 19th Asia Pacific (AEDT): 7:30am-8am

PKU ADULTS PANEL: Living with PKU & the Mental Health Burden

Day 3: Monday 18th America (EST): 4pm-5:15pm | Monday 18th Europe (GMT): 9pm-10:15pm | Tuesday 19th Asia Pacific (AEDT): 8am-9:15am

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Hello, I’m Kevin, and I have Phenylketonuria, also known as PKU. I’ve been an advocate for PKU, newborn screening, and rare disease awareness for over a decade. I started by producing my video “My PKU Life” and have since traveled around the world speaking about life with this rare disease and producing other videos about PKU.

I’m also a writer.

I’m one of those people who can’t fully process their thoughts until they write them down. So, I’ve kept a daily journal, off and on, since 2004. I have piles of journals stacked on my bookshelf in my home office. Journaling is how I make sense of life.

And that’s why I created this blog. It’s my journal, just in a different form.

Initially, I only wrote about my rare disease on this site and how it relates to mental health. But over time, I realized that there are aspects of this rare disease lifestyle that are common to us all.

You may not have PKU or a metabolic disorder, but if you have a rare disease or care for someone who does, you know what it’s like to live with something that will never go away.

It can wear you down. It can affect your mental health.

So that’s what I’m exploring here. How this rare disease lifestyle can weigh on us, burden us, and impact our mental health.

Sometimes I’ll write about PKU. Other times, I’ll reflect on the importance of newborn screening. But often, I plan to write about the rare disease lifestyle in general.

Whatever your role is in the rare disease community, I hope these journal entries prompt you to reflect on your life, your rare disease, and the role of mental health in it all.

PKU ADULTS PANEL: Living with PKU & the Mental Health Burden

Day 3: Monday 18th America (EST): 4pm-5:15pm | Monday 18th Europe (GMT): 9pm-10:15pm | Tuesday 19th Asia Pacific (AEDT): 8am-9:15am

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Bianca Albanese is an adult living with PKU from Sydney, Australia. Through her work as a biomedical engineer, avid hockey player and her love of exploring, she has travelled to quite a few countries over the years. She is currently on her first trip to South America, but has travelled Europe, North America, Asia and all around Australia. Apart from having the opportunity to meet others with PKU, a favourite travel memory is a cooking class in Tuscany where she cooked up a beautiful low protein pasta dish and veggie pizza.

PKU ADULTS PANEL: Living with PKU & the Mental Health Burden

Day 3: Monday 18th America (EST): 4pm-5:15pm | Monday 18th Europe (GMT): 9pm-10:15pm | Tuesday 19th Asia Pacific (AEDT): 8am-9:15am

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Lillian Isabella is a Cuban-American playwright and actor. She is the first known playwright with the rare disorder Phenylketonuria (PKU). Her plays have been produced and developed in NYC at The Tank, Cherry Lane Theatre, Metropolitan Playhouse, NYC Fringe Fest, Nuyorican Poets Cafe, and the United Nations. She grew up in The Bronx, NY and has a BFA in Theatre from NYU, Tisch School of the Arts. Connect on IG: @lillian.Isabella

PKU ADULTS PANEL: Living with PKU & the Mental Health Burden

Day 3: Monday 18th America (EST): 4pm-5:15pm | Monday 18th Europe (GMT): 9pm-10:15pm | Tuesday 19th Asia Pacific (AEDT): 8am-9:15am

Bio coming soon!

PKU ADULTS PANEL: Living with PKU & the Mental Health Burden

Day 3: Monday 18th America (EST): 4pm-5:15pm | Monday 18th Europe (GMT): 9pm-10:15pm | Tuesday 19th Asia Pacific (AEDT): 8am-9:15am

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Richard is an adult from the United Kingdom who has PKU. He has been following the PKU diet for his entire life and in the summer of 2023, he completed a medical trial for Kuvan/Sapropterin. Richard is employed by a local UK university where he delivers Employability Skills to students and graduates. He has two children, both of whom do not have PKU. He is interested in sports, fitness, and nutrition, and regularly works out in his gym with a focus on strength training. Richard also enjoys hiking, snowboarding, and playing tennis and in his teenage/young adult years spent countless hours participating in various sports such as football (soccer), martial arts, and athletics. Overall, he is passionate about maintaining good health and well-being.

PKU ADULTS PANEL: Living with PKU & the Mental Health Burden

Day 3: Monday 18th America (EST): 4pm-5:15pm | Monday 18th Europe (GMT): 9pm-10:15pm | Tuesday 19th Asia Pacific (AEDT): 8am-9:15am

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I am an adult living with PKU from Ireland. I have been on dietary therapy since being diagnosed at birth.

Working as a Senior Treasury Analyst in the insurance industry.

I am a voluntary patient rep and was appointed chairperson of the PKU association of Ireland in June of 2023.

I have also recently worked with ESPKU on some matters at the European level.