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Charalambos Papadopoulos: Rare patients have their “Nest”

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Charalambos Papadopoulos: Rare patients have their

The President of the Pancyprian Alliance of Rare Diseases Charalambos Papadopoulos in an interview talks about rare diseases and rare patients, how the State treats these patients and the creation of the “Nest” Center, the first Center for Specialized Social Services for people with disabilities in Europe, a partnership with the Bank of Cyprus.

What are the causes of rare diseases and what are the main ones?

By decision of the European Commission, diseases that affect a number less than or equal to 5 people per 10,000 of the population of each member state of the European Union are rarely defined. Today, there are more than 6,000 rare diseases recorded. In total, an estimated 300 million citizens of the European Union live with at least one rare disease, many of which remain undiagnosed.

In the majority of them, in a percentage of about 80%, the rare diseases are due to genetic or hereditary causes. Others are due to exposure to environmental factors during pregnancy or at a later stage of life, often in combination with a genetic predisposition. For some other rare diseases, the causes are still unknown. Rare diseases are chronic and have a progressive and degenerative course, which is why early diagnosis and multidisciplinary treatment are required.

It is worth noting that some diseases have a geographical designation within a country. For example, in Cyprus there are locally identified diseases such as Cystic Fibrosis in Athienou, Amyloidosis (Crusader Disease) in Pachna, Friedreich's disorder in Paphos and others.

Other common rare diseases found in Cyprus are Thalassemia and other hemoglobinopathies such as Sickle Cell Anemia, Myasthenia Gravis, Muscular Dystrophies of various types, there are autoimmune diseases such as Systemic Lupus erythematosus, Lyme disease and Alzheimer's disease including astrophysicist Stephen Hawking, Huntington's Disease, Scleroderma, Retinopathy, Marfan Syndrome, Glutary Acute Urinary Tract Type I and other inherited metabolic diseases, various Congenital Syndrome, .

Charalambos Papadopoulos: Rare patients have their

How many rare patients are there in Cyprus?

The exact number of rare patients in Cyprus is not known as there is no national record, something which we hope will be resolved with the introduction of the electronic file in GESS. Based on European statistics, it is estimated that in Cyprus the number of rare patients is between 60,000 and 80,000.

The big challenges

What are the biggest challenges facing a rare patient today?

It is the access to adequate medical specialization : Due to the rarity of diseases the medical specialization is limited and for some extremely rare diseases there is no specialization. In countries with small populations such as Cyprus, the problem is even greater and so patients in many cases are forced to seek medical care for their condition abroad, with all that entails.

There is still access to pharmacotherapy: The drugs used to treat rare diseases are called orphans and because they target a limited number of patients, companies are reluctant to develop such drugs due to their low profit margin. Even if some drugs are developed, their prices are extremely high. This is a deterrent to states making these drugs available to patients.

Gesy and rare patient

How do you see the health landscape evolving for a portion of patients with serious problems, such as rare patients, and how does GESS support a rare patient?

The European Union, wanting to better address the ravages of rare diseases, has set up the European Reference Networks (EHRs). These Networks are innovative networking and collaboration platforms between healthcare providers and specialist medical centers from all EU Member States. Participation in EHRs gives access to the medical centers and health professionals of each Member State participating in them, the knowledge and expertise of all EHRs and enables them to improve the health services provided and to acquire specialized knowledge.

Recognizing the benefits that EDA can offer, clinics and departments from various nursing and laboratory institutions in Cyprus have joined the EDA so that they can take advantage of the expertise produced in Europe.

At the same time, the development of technology has offered innovative pharmacotherapies and even gene therapies for some diseases.

With regard to GESS, chronic and rare patients can enjoy universal and equal access to health services without having to pay exorbitant sums of money. At the same time, the process is facilitated by the free choice of a doctor / hospital or other health professional.

How does society deal with a chronic patient with multiple problems and issues, such as the rare patient?

Unfortunately, the lack of information of the society often creates feelings of fear or rejection in the rare patients. There is also often a false impression of their ability to work and productivity, which excludes rare patients from the job market. Although in recent years we have seen a constant update on rare diseases through various actions and manifestations of patient organizations active in the field, we believe that this image will be reversed in the future and rare patients will be able to fully integrate into society.

Charalambos Papadopoulos: Rare patients have their

The “Folia” Center

How was the “Folia” Center created and what work does it perform? From its operation until today, how does it help rare patients?

In 2017, the Pancyprian Alliance for Rare Diseases (PASP) created, in collaboration with the Bank of Cyprus, the “Folia” Center, which is the first of its kind in the Center for Specialized Social Services for people with rare diseases in Europe. The purpose of creating the Center was and remains the relief of patients and their families from the daily suffering by offering services in the fields of Support, Education and Information.

In 2020, due to the expansion of its activities and staff, the Center was relocated to new offices provided by the Bank of Cyprus.

In order to best serve the needs of rare patients, PASSP, through the operation of the Center, has developed various services, programs and tools for the benefit of patients' organizations and the individual members it represents. The main ones are:

Support for patient requests : The service has been operating since July 2017, when the “Folia” Center was established, and concerns individuals or organized groups. The requests are processed by a specific Officer of the Center with appropriate education and training depending on the nature of the request.

Psychological support program: The program aims to provide psychological support to patients with rare diseases by Clinical Psychologists and Health Psychologists, with appropriate training and experience in the subject, in the context of one-on-one meetings. The service is provided free of charge by PASP to all its members on a nationwide basis.

Tools :

DiekdikoCY

The online platform DiekdikoCY aims at the immediate and valid information of patients with rare diseases, and not only, about the existing government services, the criteria for their access to them and their rights.

RARE e CONNECT

It is a tele-collaboration and e-learning platform that supports and promotes national and European networking of patients with other patients and health professionals with other professionals respectively for the exchange of knowledge and experiences regarding rare diseases.

On the part of rare patients, what message would you like to send to the State?

Access to quality health and welfare services is an inalienable right of every citizen and should be treated as such.

The recent pandemic showed that there are still obvious weaknesses in the system which emerged in the state's effort to protect vulnerable groups by closing various departments and government agencies during this period.

We have gained various experiences which we are ready to present to the decision-making centers.

Source: www.philenews.com

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