FABRY INTERNATIONAL NETWORK

Global Community Connect 2027

23 – 25 April 2027 | Warsaw, Poland

What can we learn from one another to improve life with Fabry and strengthen our patient organisations?

Join Fabry International Network in Warsaw for Global Community Connect, bringing together FIN’s member organisations to share experiences, explore questions and build connections.

We warmly welcome people living with Fabry, family members, caregivers and patient advocates who are part of a FIN member organisation, alongside invited healthcare professionals and FIN partners. Whether you want to better understand Fabry care, exchange practical ideas or connect with others across our member organisations, we look forward to seeing you.

The program is being developed with time for questions, conversation and practical learning. We want participants to leave with useful insights, new connections and ideas they can bring back to their organisations and communities.

GLOBAL COMMUNITY CONNECT 2027

What to expect

friday 23 april

Sharing best practices

Friday’s Sharing Best Practices programme is dedicated to patient representatives who actively help run and shape FIN member organisations.

Together, we will explore what has worked for other organisations, discuss shared challenges and exchange approaches that participants can adapt to their own communities. Planned activities include organisational success stories, practical skills development and small-group problem solving, alongside an update on FIN’s work.

There will also be time to connect with peers, ask for support and identify practical next steps for your organisation.

saturday 24 april

Understanding Fabry and living well

Saturday brings the wider community together with international experts for presentations, dialogue and interactive workshops. The developing programme will explore:

  • Living well with Fabry: practical perspectives on everyday life and wellbeing.
  • What good Fabry care should look like: monitoring and follow-up across ages and life stages, understanding tests and patient expectations.
  • Knowledge gaps in Fabry and why they matter to the community.
  • New perspectives from emerging clinicians and young adults.
  • Communication between patients and healthcare professionals, including situations where patients do not feel heard.

A facilitated expert dialogue will explore questions from the community. Practical workshops will give participants time to discuss experiences and work through ideas together. The programme is preliminary; topics, contributors and formats may change.

Speakers

 

Robert J. Hopkin, MD

Associate Professor of Clinical Pediatrics

Cincinnati Children’s Hospital Medical Center

Robert J. Hopkin, MD, is an associate professor of clinical pediatrics at Cincinnati Children’s Hospital Medical Center within the University of Cincinnati College of Medicine. Dr. Hopkin graduated from the University of Nevada Medical School. He completed residency and chief residency in pediatrics at the Phoenix Children’s Hospital, Maricopa Medical Center Combined Residency Program. His training in medical genetics was completed at Cincinnati Children’s Hospital Medical Center.

The majority of Dr. Hopkin’s time is spent in caring for patients with genetic disorders. He participates in clinics from Fetal Care to Adult Genetics. He is also actively involved in education of health care providers regarding the application of genetics for patient care. Dr. Hopkin has participated in a number of clinical trials and is a member of American College of Medical Genetics Committee on Therapeutics. He has participated in natural history studies on Fabry disease, Pompe disease, velocardiofacial syndrome, Pierre Robin sequence, neurofibromatosis type I, and several other genetic conditions. The unifying principle in his research interests is application of scientific knowledge to improve outcomes for patients afflicted with genetic disorders.

 

Dr. Seema Kanwal

Naturopathic Doctor

Vancouver, Canada

Dr. Seema Kanwal has been a practicing naturopathic doctor in Vancouver since 2006 and is the only Naturopathic doctor trained in Canada in the Apo E Gene diet. She has extensive experience with and is passionate about working with individuals who have rare genetic diseases and suffer many stress related conditions as a result such as mental health issues, insomnia, and low energy.

She helps to guide people living with rare diseases to increased mental wellness, energy, vitality and an overall higher standard of life — they often didn’t know was possible to experience with their condition.

She has 10 years of experience in sport medicine and treating a wide range of conditions such as cancer, hormonal imbalances for women and men, stress related conditions, pre and post natal care, cardiovascular disease, chronic fatigue, autoimmune, thyroid imbalances, digestive issues (IBS, Chron’s, Candida), Alzheimer’s (through the APOE Gene), sports related injuries and many more.

Prof. Derralynn Hughes

Professor of Experimental Haematology

University College London

Prof. Derralynn Hughes is Professor of Experimental Haematology at the University College London, Clinical Director of Research and Innovation at the Royal Free London NHS Foundation Trust, and Co-Clinical Director of the NCL cancer Alliance. She is also chair of the European Working Group on Gaucher Disease. She has clinical responsibilities in the area of Haematology and Lysosomal Storage Disorders and is chair of the anaemia clinical practice group.

She directs the research programme in the LSD unit where interests include understanding the pathophysiology of phenotypic heterogeneity in Fabry Disease and bone related pathology in Gaucher disease and malignancy. Prof Hughes is Principal Investigator of a number of clinical trials examining the efficacy of Enzyme, Chaperone and gene therapies and other new agents in the treatment of Gaucher, Fabry, Pompe and MPS disorders.

A particular interest relates to the clinical and biological effects of bone disease and malignancy in Gaucher disease. She is an author of over 150 papers in the area of macrophage biology and lysosomal Storage Disorders.

Venue & accomodation

Global Community Connect will take place at Crowne Plaza Warsaw, The HUB. Staying at the meeting venue provides opportunities to continue conversations and connect with other participants throughout your stay.

Explore Crowne Plaza Warsaw – The HUB

  • Hotel accommodation: €150 per person, per night, including breakfast, VAT and service charges
  • Meeting registration fee: €185 per person
  • Registration deadline: 31 January 2027
  • Cancellation fees apply after 5 February 2027.

Participation support

We want FIN member organisations with limited resources to have the opportunity to contribute to Global Community Connect.

This year, FIN is offering a participation grant to support one emerging or underrepresented Fabry patient organisation, with up to two delegates attending on its behalf.

The grant is intended to help an organisation that would otherwise find it difficult to attend. Its purpose is to support active participation, peer exchange and learning that can benefit the organisation’s wider community after the meeting.

If your organisation would need support to take part, contact coordinator@fabrynetwork.org. Our coordinator will share further details about eligibility, the application process, deadlines and the costs that may be covered.

Funding is limited and subject to selection.

Frequently Asked Questions

We welcome people living with Fabry, family members, caregivers, patient advocates, representatives of patient organisations, healthcare professionals and FIN partners. Some sessions are intended for a specific audience. Sharing Best Practices is dedicated to representatives actively involved in the work of FIN member organisations.

Sharing Best Practices is designed for patient representatives from FIN member organisations who are directly involved in running their organisation or shaping its work. This includes board members, representatives involved in day-to-day activities, and those who work closely with their board to inform decisions and share feedback. You do not need to hold a formal board position, but you should have an active organisational role. When choosing delegates for this session, please prioritise people who can share practical organisational experiences and bring ideas and learning back to their organisation.

You can explore questions about Fabry with international experts, exchange experiences with other participants and build connections across the community. Patient organisation representatives will also have opportunities to learn from peers and develop ideas to strengthen their organisation’s work.

Global Community Connect will take place in Warsaw, Poland, from 23 to 25 April 2027, at Crowne Plaza Warsaw, The HUB. Please consult the programme for session dates and times when arranging your travel.

The registration fee is €185 per person, this fee covers participation in the meeting program and meals served during the program. It also contributes to the venue and event organisation costs, helping us create a valuable learning and networking experience for everyone attending.

Hotel accommodation costs €150 per person, per night, including breakfast, VAT and service charges.

Complete the online registration form using the Register button on this page.

Please complete your registration by 31 January 2027.

Cancellation fees apply after 5 February 2027. If you need to cancel your registration or accommodation, please contact coordinator@fabrynetwork.org.

Yes. FIN is offering a limited participation grant for one emerging or underrepresented Fabry patient organisation, supporting up to two delegates. Contact coordinator@fabrynetwork.org for details about eligibility and how to apply. Support is subject to selection and is not automatically included with registration.

Please email coordinator@fabrynetwork.org with questions about registration, accommodation or participation. If you have accessibility, dietary or other participation needs, please let us know so we can discuss arrangements with you.

With the support of