Research projects

Discover research projects related to our network and stay informed about the progress shaping these initiatives:

  • BUR-EB – European study on the burden of epidermolysis bullosa
  • ERDERA – European Rare Diseases Research Alliance
  • ERICA – European rare disease research coordination and support action

BUR-EB – European study on the burden of epidermolysis bullosa

BUR-EB is a joint initiative of expert centers for public health economics and for rare skin diseases in particular EB in strict collaboration with the EB patients associations DEBRA International and the national DEBRAs.

The study is addressed to individuals with EB and their families and will be carried out in six European countries (Bulgaria, France, Germany, Hungary, Italy and Spain).

For more information click here

Project presentation (EN)
Project presentation (FR)

We would like to inform you about an European research study: BUR-EB, conducted in seven European countries, to study -thanks to a questionnaire- the social and economic burden of Epidermolysis Bullosa disease on patients and their families & caregivers.

Data related to the impact of EB on every-day life is collected from affected persons and their caregivers via an anonymous survey in collaboration with clinicians and patient organizations (DEBRA). Based on the results, information materials will be developed to help patients and their families to cope better with the illness.

The study has been reviewed and approved by the Medication Research Ethics Committee of the Canary Islands University Hospital Complex (Coordinator of the project).

BUR-EB offers an opportunity to observe how the social and economic impact of EB has changed over the last decade and how these changes could be related to the health and social policies implemented during that period. This questionnaire will be an important tool to provide significant insights and recommendations guiding both European and national health policies.

For more information about the project click here

If you are professional and from any EU country you can Participate to the BUR-EB Project!
The WP5 from BUR-EB project is looking for clinical experts with direct experience in EB (medical doctors or nurses).
If you are willing to participate, please kindly provide your contact information and consent by filling out a short questionnaire: click here

More Information: This Bur-EB WP5 is seeking to build an international community of people with Epidermolysis Bullosa (EB), their care givers, and relevant healthcare professionals from 7 EU countries (France, Germany, Hungary, Italy, Spain, Austria and Bulgaria) to co-create Patient Journey Maps and self-care informational materials. Stakeholders of this community – and particularly EB patients – will be able to connect between them and to face the disease with the support and strength of a group that knows and lives with the same constraints and difficulties.

Bur-EB would like to discuss with you, as professionals, your experiences regarding EB patients’ disease management focusing on empowerment, shared decision making, and capacity building. Through this process, they aim to develop a Patient Journey Map for EB. Patient’s Journey Maps are graphical representations of trajectories of care that can be used to identify needs, create self-care informational materials, or redesign health services. Here and here you can consult examples of such maps.

Self-care informational materials will be also developed for the prioritised capacity building needs. You can find examples of self-care materials in our BUR-EB Library, here.

What will your participation mean? Bur-EB is inviting you as a healthcare professional with experience in EB to participate in this co-creation process. Participation will entail sharing your knowledge and clinical experience in a 60 minutes online group focal or interview that would help them define the clinical pathway of EB that will be carried out between May and July 2023 depending on your availability. During the meeting they will present you the project, discuss which is the best itinerary of care and propose to you further possibilities to engage in the co-creation process.

ERDERA – European Rare Diseases Research Alliance

Today, around 7000 rare diseases affect more that 300 million people worldwide, yet the majority of rare and ultra rare diseases still lack a therapeutic option. Patients endure a long journey to receive a diagnosis, which typically takes four years for known diseases; however, 50% of patients never obtain a definitive molecular diagnosis. Moreover, 52% of patients and caregivers report that their condition has a severe impact on their daily lives.

To address these important issues, the European Rare Diseases Research Alliance (ERDERA) has been set up to build on the advancements made by former EU-funded projects such as SOLVE-RD, ERICA and the European Joint Programme for Rare Diseases (EJP RD), the previous partnership which has run for the past 5 years.

ERDERA will continue developing a robust and comprehensive data and expertise infrastructure and innovative clinical research services —with a focus on advanced therapies—, funding new research projects, providing training and expediting translation of findings into tangible solutions for patients. It will also ensure alignment on international and national rare diseases research strategies.

Read press release

ERICA – European rare disease research coordination and support action

The aim of the ERICA consortium, in which all 24 European Reference Networks (ERNs) take part, is to build on the strength of the individual ERNs and create a platform that integrates all ERNs research and innovation capacity.

Through knowledge sharing, engagement with stakeholders in the rare disease domain and assembly of transdisciplinary research groups working across the global health spectrum, ERICA strives to reach the following goals:

  • new intra- and inter-ERN rare disease competitive networks;
  • effective data collection strategies;
  • better patient involvement;
  • enhanced quality and impact of clinical trials;
  • Increased awareness of ERNs innovation potential.

ERICA will strengthen research and innovation capacity by the integration of ERN research activities, outreach to European research infrastructures to synergistically increase impact and innovation. This will result in efficient access and safe therapies for the benefit of patients suffering from rare diseases and complex conditions.

The ERICA 3rd General Assembly took place from the 6th to the 7th of July in Madrid as a face-to-face meeting. It was hosted by Servicio Madrileno de Salud- Hospital Universitario La Paz (SERMAS-HULP). Coordination office of ERN-TransplantChild.

The aim of the General Assembly (GA) was to inform all the beneficiaries about the progress of the planned and completed ERICA project activities in more detail and to raise more awareness about the Rare Disease Research perspectives and cooperation within the ERN’s and other relevant partners.

Join the ERICA Researcher Support Group

ERN-Skin is part of ERICA consortium: European Rare Disease Research Coordination and Support Action. With the goal to strengthen research and innovation capacity, this project is proposing to organise a Transversal Research Working Group with other ERNs researchers,

If you would like to participate to this research Group, please answer the very short survey here.

More information here

This webinar aims to bridge the knowledge gap between European Reference Networks and the pharmaceutical and biotech industries, fostering collaborations that can accelerate research and development in rare diseases, ultimately benefiting patients and advancing medical science.

Access the webinar recording here