The “FOLIA” Centre

EL – EN

Objective:

With its establishment, the Centre “Folia” aimed to address the needs of rare disease patients and their families with regards to information, support, and education; and also to complement and strengthen the work of the relevant ministries (Health, Labour, Education) in these fields.

The Centre will offer services that have been recognized through the work of the Cyprus Alliance for Rare Disorders (C.A.R.D.) established six years ago, and which have stemmed from direct consultation with patients and their families, as well as with patient organizations.

 

Role

Despite the coordinated efforts of the relevant competent authorities to resolve the many and widespread health problems, there is still a lack of information and support services for rare disease patients and their families. The “Folia” Centre is an innovative centre for patients, providing services that complement and significantly strengthen the work of the relevant competent authorities. Specifically, the Centre:

 

1. Provides secretarial support to rare disease patients, particularly to individual patients or to representatives of patient organisations or parents of young children with rare diseases,

 

2. Provides valid and up-to-date information on health and social welfare policies which directly or indirectly affect rare disease patients

 

3. Communicates with the relevant competent authorities and monitors the outcome of the patients’ requests and associated correspondence.

 

4. Advocates in order to expedite the resolution of patients’ problems.

 

Thus, the Centre contributes significantly to reducing the continuous distress that this vulnerable patient group experiences due to their disease. Moreover, it contributes towards the achievement of social and occupational integration of patients and the general improvement of the patients’ quality of life.

 

As most patient requests are urgent and require immediate attention, their timely promotion and response by decision-makers are imperative, hence the Centre seeks to develop a very close and constructive collaboration with the competent ministries of Health, Labour and Education.

 

What practical support will the Centre offer to patients with rare diseases?

The support that the innovative “Folia” Centre will offer to patients with Rare Diseases will be based on three main pillars: Information, Support and Education, as outlined below:

 

Provision of general and specific information regarding existing, updated or upcoming Legislation, Guidelines, Recommendations, Regulations, and Resolutions relating to patients

Preparation of studies and investigation of problems or issues that may be general or specific to a disease or an individual patient, for submitting requests or suggestions to the competent authorities.

Secretarial Support for individual patients and patient groups by writing, documenting, sending evidence-based letters and requests, and monitoring their outcome.

Facilitating Support to Patient Associations through the provision of accounting and legal advisory services as well as the preparation and submission of funding proposals at the national, European and international level.

Intervention / Recommendation services where positions papers or interventions or recommendations will be prepared and submitted to the executive and legislative authority at the national level and to decision-making authorities at national, European and international levels.

Representation of patients and patient associations in decision-making bodies at the national, European and international level.

Allocation of the Centre’s facilities to associations that lack office infrastructure, as well as the provision of other facilities (e.g. overnight stay, children’s entertainment area etc).

Engagement in Patient Associations’ educational programmes by preparing, writing and printing informative, awareness raising or educational material as well as by organizing or co-organizing educational or informational conferences, workshops, lectures and meetings.

Creation of an Educational Centre for Patients (ECP) in collaboration with experts and C.A.R.D. collaborators on issues related to patient rights, capacity-building for Patient Associations, existing or upcoming Legislation and other regulations / programmes of the competent authorities that affect rare disease patients.

 

How will a patient contact the Centre, and how will his/her demand be forwarded to the competent bodies?

Each patient, family member or Patient Association will be able to communicate with the Centre through:

 

• Α Pancyprian Patient Support Help Line

• Email at card@raredisorders.com

• Fax at +357 22 203 766

• By post at 10 Terra Santa street, 2001, Strovolos, Nicosia

 

The patient’s request or concern will be recorded and an action plan will be drafted, which will be used to resolve the issue at hand, in collaboration with the competent authorities.

 

If necessary, a study and consultation with the Centre’s scientific associates (e.g. medical advisor, psychologist, social worker etc.) will be carried out, to ensure evidence-based letters are sent to the competent authorities.

 

Then, the outcome of the request will be closely monitored, always in communication with the patient/family member/ patient association.

 

If the request is for information, answers will be given immediately.

 

Tell us about your collaboration with the Bank of Cyprus. What does this collaboration involve?

 Since our first meeting with the Bank of Cyprus (BoC), we felt that we were amongst friends who understood the daily struggle of our patients and their families to ensure their basic rights to quality healthcare, social inclusion and education.

This feeling soon proved to be mutual, as the BoC believed in the necessity of an innovative Centre, that would directly help and provide practical support to patients with rare diseases, and would have a direct impact through its work on the lives of these patients, many of whom are individuals who feel overwhelmingly marginalized by society. The BoC has consciously chosen to embrace all patients with rare disorders and offer them a nesting place (in Greek the word ‘folia’ means ‘nest’) to feel safe and have access to the necessary information, support and education services which they require.

Our collaboration toward the realization of this common vision has been impeccable, with constant exchange of ideas and information.

 

How are “rare diseases” defined?

 Rare diseases have a prevalence equal to or less than 5 in 10,000 people. They are estimated at about 6,000-8,000 different diseases, characterized by low frequency and great heterogeneity and complexity. They account for 6-8% of the population and thus affect 27-36 million EU citizens.

The majority of rare diseases have a genetic (hereditary) origin and include congenital abnormalities and hereditary diseases. These diseases are a major Public Health issue, because they are chronic and serious. Patients are thus in need of multidisciplinary, costly and specialized therapies that require cooperation between special medical specialties. Rare diseases often result in serious complications of various forms and degrees of disability, leading patients to disabilities during the most productive phases of their lives.

Due to their rarity, there is significant difficulty in acquiring expertise. Experts are thus few or completely absent in small countries like Cyprus. This creates difficulties in obtaining early diagnosis and more generally in the treatment of these diseases. As a result, there is a significant delay in diagnosis, or indeed sometimes misdiagnosis, which lead to the provision of inappropriate treatment that can cause irrevocable consequences and distress among patients and their families.

Scientific research is poor because pharmaceutical companies do not generate huge profit from the scarce consumption of drugs for rare diseases. Therefore, they either do not invest in the research and production of such drugs, or if they do invest, the drugs are very expensive as result of limited sales capacity. Subsequently, access to drugs for rare disease patients is extremely difficult.

Many national health systems are either reluctant in supporting the holistic management of rare diseases that includes innovative treatments and high-cost drugs, or manage rare diseases incidentally rather than holistically, having a lack of expertise and coordination in patient relief, support or rehabilitation services.

 

What is the prevalence of rare diseases in Cyprus and what causes them? Please name the key ones.

In Cyprus, it is estimated that up to 70,000 people live with a rare disease. Some diseases have historical and geographical specificity, as they occur in specific areas and groups (e.g. cystic fibrosis in Athienou village, familial amyloid polyneuropathy in Kyrenia and Limassol, Friedreich’s ataxia in villages of Paphos, etc.).

Please note that some diseases are so rare that there are only 1-2 patients in Cyprus.

As mentioned above, rare diseases are a group of more than 7,000 different diseases. Some of these are:

 

• Thalassaemia
• Myasthenia Gravis
• Huntington’s Disease
• Familial Amyloid Polyneuropathy
• Cystic Fibrosis
• Scleroderma
• Retinitis pigmentosa
• Marfan Syndrome
• Sickle Cell Anaemia
• Joubert Syndrome
• Friedrich’s Ataxia
• Glutaric Oxyurea Type I
• Hereditary Multiple Exostoses
• Muscular Dystrophy
• Congenital Immunodeficiency Syndromes
• Rare Rheumatic Diseases
• Tay-Sach’s Syndrome
• Amyotrophic Lateral Sclerosis (ALS)
• Congenital Heart Diseases
• Tuberous Sclerosis

Consult the Orphanet list of rare disorders to locate more RD. We can help and support you with more and specific information and guidance.

What has been the State’s role in dealing with these incidents?

 The Ministry of Health, in line with European guidelines, established a Steering Committee in 2011 that was instructed establish a National Strategy (NS) as a primary tool for the implementation of a holistic approach to rare diseases in Cyprus. The NS was completed and approved by the Council of Ministers in March 2012.

Although the state has highlighted the great need to support rare disease patients, the vast majority of recommendations of the NS have not been fully implemented due to a lack of resources. Consequently, the work of the National Committee on Rare Diseases has not been extended or strengthened.

Additionally, despite the adoption and incorporation of the European Charter of Patients’ Rights into Cyprus Legislation since 2005, patients and citizens in general, continue to be ignorant of even their basic rights. Through this innovative Centre, we look forward to providing them with information about their rights and enabling them to achieve a good quality of life without experiencing immense distress due to their everyday medical and social needs.