By Robin Gomes
The Vatican on Wednesday expressed its solidarity with those suffering from rare diseases and urged public authorities to contribute to scientific and medical research, involving all available agencies and companies, and making available the knowledge, funding and best medical practices.
Cardinal Peter Turkson, Prefect of the Vatican Dicastery for Promoting Integral Human Development made the call in a message for the 11th Rare Disease Day, Feb 28., which this year focused on research.
Organized by the European Organization for Rare Diseases (EURORDIS), Rare Disease Day has been observed annually since 2008 on the last day of February. The purpose is to raise awareness on rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.
Lack of research into rare diseases
“Despite the considerable progress made so far,” Cardinal Turkson noted, “little is known about many of the thousands of rare identified diseases.” Besides, there is still little treatment for about 400 million people who suffer from rare diseases. For about a thousand of these diseases, the cardinal pointed out, there is not even a basic scientific knowledge. Research, he lamented, is slow, which remains one of the main aspects to be considered in the context of an action aimed at an effective treatment of rare diseases.
Forging partnership and cooperation
In order for research to be truly effective, Cardinal Turkson urged that the international community own and implement it. “The cooperation between the World Health Organization, states and the large non-governmental organizations,” he said, “is the main road to making the fight against rare diseases more effective,” reducing the number of people worldwide living with rare and undiagnosed diseases.
In this regard, the cardinal particularly appealed to the pharmaceutical industry to voluntarily donate part of its profits for research into rare diseases. “This is really an urgent and urgent cause,” he stressed.
The Church’s commitment
Every patient, Cardinal Turkson said, must be welcomed and loved and no illness must condemn him/her to abandonment and marginalization. In this regard, he said the Church, through its numerous health institutions… closely follows the situation and conditions of people suffering from rare diseases in every part of the world.