Roberta Anido

Rhiannon manages the delivery of EURORDIS’ core communications workstreams, with a strong focus on visual branding, campaign coordination, and digital storytelling.

She also leads the strategy and global execution of the Rare Disease Day campaign, working directly with the Chief Executive for this flagship initiative.

Steering CommitteeThe Rare Disease Day Steering Committee guides the overall vision and direction of the campaign.

Bringing together representatives of our national partners from across the globe, the Committee coordinates key messages, approves campaign actions, and helps shape activities at global and national levels.

By ensuring that many voices are heard and aligned, the Steering Committee keeps the campaign truly collaborative, impactful and focused on improving the lives of all people living with a rare disease.

Roberta is the Founder and President of the Association to Help Patients with Primary Immunodeficiency (A.A.P.I.D.P.), established in 2005 following her eldest daughter’s diagnosis.

Since 2007, she has served on the board of the International Patient Organisation for Primary Immunodeficiencies (IPOPI), where she oversees national member organisations across Latin America.

She is also a founder and currently the Secretary of the Argentine Federation of Rare Diseases (FADEPOF), having previously served as Vice-Chair and Chair between 2018 and 2024.Through her leadership roles, Roberta contributes to the work of ALIBER and Rare Disease International.

In recognition of her long-standing commitment to human rights advocacy, she received an Honorary Diploma from the Honourable Senate of the Argentine Nation in 2014.

Simona Bellagambi was appointed Deputy General Secretary in November 2022.She has been part of the Board of Directors of EURORDIS since 2012.She is the aunt of a fifteen-year-old girl with Tuberous Sclerosis.

Simona served the Italian TSC Association from 1999 to 2009 as National Secretary and representative in the international network.She was also in charge of the designated help line service and contributed to the set-up of the Italian network of Centres of Reference for TSC.

In addition, she has collaborated with UNIAMO, the Italian Federation for Rare Diseases, for which she became the representative in EURORDIS’ Council of National Alliances in 2005.

She has also been the promoter and coordinator in Italy of international awareness events, such as Rare Disease Day and Decide sessions within the POLKA: Patients’ Consensus on Preferred Policy Scenario for Rare Diseases project, as well as workshops on Centres of Expertise for the Rapsody project.

In addition, Simona has spoken on RD issues in several national and international conferences.Simona is a EURORDIS EUROPLAN advisor.She is a member of the Council of National Alliances.

Sarah Cannata is the Communications Manager for Rare Voices Australia, Australia’s national peak body for Australians living with a rare disease.She is a qualified journalist and has over 10 years of experience working in communications.

In addition to publishing a picture book, Sarah has been published in The Huffington Post, Elephant Journal and several Australian media outlets, including Mamamia, The Age, Women’s Agenda, SBS Online and more.

Sarah has extensive experience across a range of sectors, particularly in the not-for-profit space.She is dedicated to using her skills to benefit people living with a rare disease.

Natalie is the Head of Scotland and Public Affairs at Genetic Alliance UK, where she works to raise awareness of rare conditions, champion meaningful change and shape policy across all four nations of the UK.

She plays a key role in ensuring people with rare conditions are included in decision-making, co-chairing the Patient Involvement Advisory Group for the Scottish Strategic Network for Genomic Medicine and contributing to the Scottish Medicines Consortium Patient Involvement Network, the UK Rare Diseases Stakeholder Forum and Scotland’s Rare Disease Implementation Board.

Natalie has collaborated closely with the community to understand lived experiences and develop useful resources, including the Good Diagnosis report, the Rare Resources project and the How Decisions Are Made events.

She also works with the wider Genetic Alliance UK team to deliver impactful Rare Disease Day campaigns and events across the UK.

Darby Gavin is a Senior Community Engagement Manager at the National Organization for Rare Disorders (NORD).Broadly speaking, Darby’s role is centered around patient and family engagement in NORD’s mission.

She ensures that all individuals served by NORD’s mission see and feel themselves reflected in NORD’s work.Darby oversees the Rare Disease Day campaign that NORD drives as the official U.S.sponsor.

She also manages NORD’s Living Rare Study, and some of NORD’s volunteer programming and grassroots organizing activities.

Roselyn Kanja-Odero has been actively involved with the rare disease community since her son was diagnosed with a rare condition.

This unexpected journey, paired with a deep desire to create meaningful change, led her to co-found Rare Disorders Kenya (RDK), a national patient-led organisation advocating for rare diseases from the policy level to the grassroots.

She brings together her background in design management and her commitment to patient empowerment to develop patient-centred solutions, craft impactful advocacy communication, and strengthen community support systems.

Roselyn is engaged in rare disease advocacy both nationally and internationally, working to raise awareness, influence policy, and support families affected by rare and complex conditions.

She is also deeply involved in local community initiatives and disability-focused efforts in Kenya, championing inclusion, understanding, and community-driven support.

Nadiah brings over 20 years of experience across corporate, NGO, social entrepreneurship and humanitarian sectors, with a commitment to designing meaningful and inclusive solutions for complex global challenges.

Her work spans climate resilience, rare diseases, disability advocacy, social inequity, human rights, youth enablement and child protection, with a strong focus on building collaborative ecosystems that create sustainable impact.

She currently serves as President of the Malaysian Rare Disorders Society, regional representative for multiple countries with the Phelan McDermid Syndrome Foundation, and a Board Council Member of Rare Disease International.

Alongside these roles, she is an Adjunct Associate Professor at Taylor’s University, a trustee of the RHB Foundation, a sustainability and corporate affairs consultant, co-founder of PlayUnlimited and OpiS International, an anchor with BernamaTV and an Assistant Child Protector in the Petaling District.

From co-creating Malaysia’s first online child sexual exploitation reporting portal to advocating at global platforms like the UN General Assembly and World Health Assembly, Nadiah bridges grassroots action with international influence.

She is driven by the belief that co-creation, collaboration, kindness and bold ideas are essential for building inclusive, resilient communities where no one is left behind.

Marie is part of the Governance Unit and is responsible for supporting the Chief Executive Officer.

Prior to joining EURORDIS, Marie worked for various NGOs both in France and Vietnam.Within Médecins du Monde, she held the positions of Executive Assistant to the Director of International Operations and subsequently Fundraising Director before joining the Asian Projects Department.

In 2010, Marie decided to settle in Vietnam as a Country Coordinator for Enfance Espoir, working on an educational programme for vulnerable children.Marie holds a senior executive assistant certificate.Marie speaks French and English as well as some Spanish.

Yukiko Nishimura is the President and founder of NPO ASrid, an organisation dedicated to connecting and supporting multiple stakeholders involved in rare and intractable diseases in Japan.

With more than 18 years of experience working alongside patients, families and professionals in the rare disease and orphan drug fields, she plays a key role in strengthening collaboration and advancing shared goals.

Since 2021, she has served as a board director of APARDO, the Asia Pacific Alliance for Rare Disease Organisations.

Yukiko’s previous roles include Chief Secretariat of International Relations at the Japan Patients Association, Assistant Professor at the University of Tokyo’s Research Centre for Advanced Science and Technology, Visiting Lecturer at Kyoto University, and technical consultant at the Ministry of Education (MEXT).

She holds a BSc and MSc from Meiji University and completed graduate studies at the University of Tokyo’s Graduate School of Science.

Bianca Paslak-Leptien has been the communications manager at „ACHSE – Rare Diseases Germany“ since 2015, and she has been responsible for promoting the mission of Rare Disease Day across the country through campaigns, exhibitions, workshops, and various events.

She is also part of the management team at ACHSE.The trained cultural scientist has gained extensive experience working with NGOs such as Doctors Without Borders and within the cultural sector.

Jean Saslawsky joined EURORDIS in June 2026 as Chief Executive Officer.

He is an international nonprofit executive with more than 25 years of leadership experience in the health, humanitarian and social impact sectors, and has built a career leading mission-driven organisations, developing strategic partnerships and strengthening international networks across Europe and beyond.

Throughout his career, Jean has worked extensively at the intersection of health policy, programme delivery, innovation and organisational development.

He has significant experience engaging with European institutions, managing complex multi-country projects, and building coalitions that deliver social impact.