Observed on the rarest day of the year, the 29th of February, Rare Disease Day brings together a global community to raise awareness and drive change for the 300+ million people living with rare diseases globally.
There are approximately 7,000 known rare diseases, yet for the majority of rare and ultra-rare conditions, there are no effective therapeutic options available. Rare Disease Day seeks to advance research, healthcare, and access to accurate diagnosis and innovative treatments for individuals living with rare diseases.
To mark this important day and as active participants in the rare disease research community, we have offered a glimpse into some of the projects Teamit is involved in and how these initiatives are making a real difference to improve the lives of those living with rare diseases.
These projects are REMEDi4ALL, ERDERA, and RealiseD, explained further below.
REMEDi4ALL
REMEDi4ALL is an EU-funded research initiative to drive forward the repurposing of medicines in Europe. This strategy has the potential to reduce the time and costs of drug development by focusing on already approved, discontinued, shelved, or investigational therapeutics.
Drug repurposing, finding new uses for existing medicines, has the potential to deliver treatments to patients faster and more cost-effectively. Moreover, drug repurposing can provide treatments to patients with limited therapeutic options, especially in the rare disease space where, of the 7,000 rare diseases with a known molecular basis, only around 500 have treatments.
The REMEDi4ALL consortium brings together a unique combination of multi-disciplinary expertise to address the complexities of drug repurposing. The project unites 24 organisations in the fields of clinical and translational research, clinical operations, patient engagement and education, regulatory frameworks, funding, governance, Health Technology Assessment (HTA), and pricing and reimbursement to closely collaborate in making drug repurposing mainstream.
Teamit has been heavily involved since the proposal’s conception and contributes with expertise in project management, consortium governance, communications and dissemination, and training.
More information on the project here.
ERDERA
The European Rare Disease Research Alliance (ERDERA) is a seven-year partnership launched in September 2024, formed by 180 partners from the public and private sectors across 36 countries. Championed by the European Union under Horizon Europe and member states, it aims to improve the lives of 30 million rare disease patients in Europe and beyond.
This alliance builds upon the co-funded European Joint Programme on Rare Diseases (EJP RD) to bring together all knowledge, resources, and services under one roof. It will boost clinical research and spur innovation to make Europe a world leader in this field.
With an estimated overall budget of 380 million euros until 2031, ERDERA has three distinct areas to tackle this objective: better prevention, better diagnosis, and better treatment, with a shared vision of making Europe a world leader in rare disease research and innovation.
ERDERA’s concrete ambitions are to deliver tangible solutions for better outcomes. These are:
- Diagnosis within six months for identified diseases or inclusion in a global diagnostic and research pipeline for unknown disorders.
- 1,000 new therapies approved to provide treatment for the 95% of rare diseases that currently have no therapeutic option available.
- Better evaluation and understanding of the impact of rare diseases on patients, families, and healthcare systems to inform policy decisions.
Teamit contributes to ERDERA through our expertise in project management, as well as in communication and dissemination, ensuring the smooth implementation and effective outreach of the initiative.
More information on the project here.
RealiseD
RealiseD (CompRehensive mEthodological Approach to cLinical trIalS in (ultra-)rarE Diseases) is a five-year project launched in January 2025, uniting nearly 40 partners from academia, regulatory bodies, clinical research institutes and hospitals, patient organisations, pharmaceutical companies, and European Research Infrastructures to redefine the paradigm for rare/ultra-rare disease clinical trials. The project is led by Sigmund Freud Private University and AstraZeneca and is funded by the Innovative Health Initiative (IHI), an EU public-private partnership funding health research and innovation.
With an estimated overall budget of 17 million euros, RealiseD’s objective is to transform clinical trials for ultra-rare diseases and accelerate the development of treatments for rare and ultra-rare conditions that have no treatment options. This will be achieved through the development of innovative clinical trial designs with cutting-edge operational and methodological tools and resources.
Teamit contributes valuable expertise in project management, communications and dissemination, and training, ensuring the successful execution and dissemination of RealiseD’s various outputs.
More information on the project here.
Teamit for Rare Diseases
The discussions and initiatives sparked by Rare Disease Day highlight a major step forward in the European rare disease research landscape. While each of the aforementioned projects has its own distinct focus, together they reinforce a shared commitment to making a meaningful difference for individuals living with rare diseases and their families. At Teamit, we are proud to contribute to this diverse range of projects that drive progress in rare disease research, awareness, and innovation.
With expertise in project management, communication, and dissemination, Teamit helps amplify the visibility of rare diseases and strengthen the collective movement towards better care, research, and policy. Our dedication remains unwavering as we work towards a future where rare diseases receive the recognition, resources, and action they deserve — ensuring no one is left behind.
