Rare diseases are not as rare as we may think they are. In Europe, around 30 million of our citizens are impacted by some 6000 different forms of rare disease - with several patients also present in Malta.

As we mark Rare Disease Day 2021, I call for joint, swift and decisive action at both European and local levels on this reality -one that is going to need close collaboration between stakeholders and across member states, the benefits of the latest research and the use of cutting-edge technologies in the immediate future.

At a meeting I had last week with the National Alliance for Rare Diseases Support - Malta, the crucial matter was raised that patients living with rare disease should be given high priority in the Covid vaccination roll-out.

I have since then followed up this urgent issue in my meeting with the European Organisation for Rare Diseases (Eurordis), who has also stated that people living with rare or chronic diseases should be among the first to be inoculated against Covid.

I am in firm support of this position and call on the responsible authorities throughout the EU to action upon it.

In my address at a Rare Diseases event organised by EU40, Reuters and other entities earlier this week, I have insisted that having rare disease on our political agenda is a moral imperative for all of us.

Right now, we are at the beginning of a new European programming period. It is a unique opportunity to plan ahead initiatives for the coming seven years, and to achieve maximum effect in improving the lives of people with rare disease and their loved ones through European funding.

Research is of paramount importance: the potential of opportunities under Horizon Europe should be fully developed and I am committed to make this programme more effective due to my role as one of the Members of the European Parliament negotiating its implementation.

The uncommon features characterising rare diseases make it difficult to gather relatively large amounts of data to better study these rare conditions.

This is the reason why, as a Member of the ITRE committee, the parliamentary body dealing with research, digital and industrial issues, I will closely monitor the development of those digital policies aiming at enhancing the use of data through cross-border cooperation, in order to enable more effective research outcomes which could be beneficial for patients and their families.

As policy makers, we must listen intently to all stakeholders in the field - experts, the patients themselves, their families. We need to ensure a collaborative approach in order to be able to shape a holistic and inclusive management of rare diseases, not least since the effects of having a rare disease are not limited to their physical aspect.

Suffering from a rare disease can have a serious impact on the mental health of patients. And it comes at a very high price, both in a financial sense as well as the patient's reduced ability to carry out a normal social life.

For these reasons, our strategy for rare diseases needs to be based on a supportive approach, using innovative methods for treating them while ensuring the availability of more professionals with knowledge of the diverse range of rare diseases that exist.

I have indeed raised this point at the local level during my meeting with the National Alliance, as well as in my role as member of the Parliamentary Network of Rare Disease Advocates.

Creating more awareness on rare diseases means not only being aware, but also knowing the signs and symptoms, of rare forms of illness and how they manifest.

Building such awareness means investing in innovative methods as well as the sharing of best practices and appropriate training for our medical, social, psycho-social staff and educators to understand the signs and symptoms of rare forms of illness.

The impact of Covid-19 on rare disease patients also needs to be accounted for. Collaboration between entities and the various stakeholders advocating for rare disease patients is key, as well as the pooling of knowledge across EU Member States and third countries in the effort to find the most effective ways of improving the lives of rare disease sufferers and their families.

Dr Josianne Cutajar is a Member of the European Parliament