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DEBRA Groups represented at Rare Women International Forum

Representatives from across the global DEBRA network joined international patient advocates, healthcare professionals, and rare disease leaders at the Rare Women International Forum, held in Moscow, Russia, on 24 April 2026. The forum brought together voices from across the rare disease community to highlight the experiences, leadership, and resilience of women living with and raising children with rare diseases.


Hosted by DEBRA Russia through the Butterfly Children Foundation and the Rare Women project, the event welcomed more than 400 participants from 15 countries, alongside thousands of online attendees and live broadcasts in multiple languages. The programme focused on sharing international best practices, strengthening collaboration between patient organisations, and elevating the voices of women within the rare disease community.


DEBRA International President Ritu Jain delivered an online address during the forum, recognising the importance of international cooperation within the rare disease community and celebrating the role of patient organisations in improving the lives of people living with rare conditions worldwide.


DEBRA International representation


DEBRA International was strongly represented throughout the programme, with members contributing expertise and lived experience across several key sessions.


Among the DEBRA community members attending and contributing to the forum were:

  • Angélique Sauvestre, Vice-President of DEBRA International and Vice-President of DEBRA France

  • Vlasta Zmazek, President of DEBRA Croatia and former Member of the Executive Committee of DEBRA International

  • Mercedes Alessandri, EB nurse with DEBRA Chile

  • Hanaa El-Sadat, Founder of Yasmine El Samra Foundation – DEBRA Egypt and former Member of the Executive Committee of DEBRA International

  • Toni Roberts, President of DEBRA International Youth Council and Co-founder of DEBRA South Africa

  • Cady Ward, Co-founder of DEBRA South Africa

  • Setsuko Shiraishi, Executive Director of DEBRA Mexico and Member of the Executive Committee of DEBRA International


DEBRA representatives participated in a range of discussions and panel sessions throughout the forum, including:

  • Women’s Leadership in Rare Disease Advocacy

  • International Cooperation Between Patient Organisations

  • Home Care as the Foundation of Family Resilience

  • The Role of Lived Experience in Healthcare Decision-Making

  • Building Sustainable Support Networks for Rare Disease Families


Several sessions highlighted how patient organisations have evolved from grassroots parent-led initiatives into influential organisations within healthcare systems. DEBRA representatives shared perspectives from their own countries, demonstrating the impact of advocacy, peer support, and community-led care for people living with EB.


The participation of DEBRA members reinforced the importance of global collaboration in strengthening support networks for families affected by rare diseases. By bringing together leaders from across continents, the forum created valuable opportunities to exchange ideas, share successful models of care, and develop stronger international partnerships.


The Rare Women forum made me realise just how common these extraordinary women are—women who are fully committed to supporting a sick child. These are women who have decided to fight back rather than sit idly by, having been struck by misfortune, whether genetic or otherwise. A mother’s love is incredibly powerful – is it because we carry these children in our wombs for an average of nine months? People on the outside sometimes see us as inspiring women, but we are probably just tough women who have been tested by life.

Angélique Sauvestre, Vice-President of DEBRA International

 

DEBRA International would also like to extend thanks to DEBRA Russia and the Butterfly Children Foundation for organising this event. The Rare Women International Forum provided an important platform to recognise the vital role of women in rare disease care and advocacy, while showcasing the strength and expertise that DEBRA organisations bring to the global rare disease movement.




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