Experts from across Europe will participate in this year's Rare Disease Forum

On 27 February, the day before Rare Disease Day, Latvia will host the Rare Disease Forum, which will be the third educational event of its kind with a diverse programme, bringing together healthcare professionals, patient representatives, decision-makers, people with rare diseases, and their loved ones. This year, the forum has become international.

This year's Rare Disease Day in Latvia has turned into Rare Disease Month, featuring both an informative campaign with the slogan "Rare, but many! 100,000 reasons to act!" and a Rare Disease Forum

The forum will take place in person (for registered participants) at the main building of Rīga Stradiņš University (RSU) from 9:00 to 16:30. The forum will be broadcast live on the Facebook and YouTube profiles of the Latvian Rare Disease Alliance, as well as on the LSM.lv portal.

International experts

The implementation and results of national rare disease plans will be discussed from a doctor's perspective by Birutė Tumiene (Vilnius University Faculty of Medicine), and Ariane Weinman (European Organization for Rare Diseases, EURORDIS).

A special guest at this year's forum will be Victoria Hedley, co-director of the Rare Disease Research Center of Excellence at Newcastle University and rare disease policy maker, who will join remotely from the UK. She is an internationally renowned expert on rare diseases who has been involved in major international projects for many years. At the forum, she will talk about efforts to achieve coordinated and joint European action in the field of rare diseases.

One of the greatest advantages for patient organisations will be the experience that Bojana Mirosavljević from Serbia will share, who is the head of patient advocacy strategy at the international clinical research organisation ICON. She herself has had a child with a rare disease and has literally revolutionised the field of rare diseases in her country, persuading legislators to change the system.

Anne Hugon from the Sorbonne and the European Reference Network for Rare Diseases ERN ITACA, who also heads a patient organisation, is an experienced European Union project manager and clinical research and innovation expert, and she will share her experience of patient organisation cooperation in European reference networks.

Local doctors and patient associations will also share their experiences, discussing the importance of genetics, the interaction between patient organisations and policymakers, and European reference networks.

Discussions and parallel sessions

The second part of the forum will feature three parallel breakout sessions. One will be about the underfunded care of rare disease patients, where treatment exists but is not accessible. The discussion will analyse why rare disease patients in Latvia have to wait for treatment and what can be done differently. It will be moderated by Juris Beikmanis.

The second session will be more focused on habilitation, or helping people develop abilities they lack due to rare diseases, and will be moderated by Gunta Kristapsone, Head of the Rehabilitation Center at the Children's Clinical University Hospital, and Guna Bērziņa, Associate Professor at the RSU Department of Rehabilitation.

The third working session, The Role of Patient Organisations, will be moderated by Ieva Plūme, board member of the Latvian Alliance for Rare Diseases, Alla Beļinska, chair of the board of the Latvian Cystic Fibrosis Association, and Velga Polinska, board member of the Down Syndrome Association of Latvia. This working session will discuss how organisations can effectively represent their patient groups, how to encourage people with rare diseases to join organisations, and how to ensure fruitful cooperation between all parties involved.

Registration

Foruma programma

The Rare Disease Forum is being organised by the Latvian Rare Disease Alliance, the Rare Disease Coordination Centre at the Children's Hospital, the Education and Science Department at the Children's Hospital, and the RSU Lifelong Learning Centre. The aim of the forum is to provide an opportunity for medical professionals, people with rare diseases, parents of children with rare diseases, and patient care providers to learn, network, discuss, and explore.