RDG MEMBERS

“95” Rare Alliance Greece

We are a newly established primary Association based in Athens with the vision to support Rare Patients in Greece. The Association originated from patients’ and parents’ initiatives, with extensive experience advocating for patients’ rights at the national and European levels.

The Association’s founding members are trained representatives of the European Patients’ Academy (EUPATI) and the Patients’ Academy of the European Organization for Rare Diseases (EURORDIS). At the same time, the Association is also a member of EURORDIS and a founding member of the Hellenic Patients’ Association.

The number “95” is a distinguishing title of the Association, symbolizing the 95% of rare diseases that still have no treatment.

Karkinaki

Karkinaki is Nefeli, Antonis, Vasya, Fotini; and Nikos. It is every child or teenager who has cancer in Greece. Therefore, it is a way for these children and for us, their families, to talk openly about childhood and teenage cancer.

From the simplest things, such as hand hygiene that ensures the limitation of infections that can endanger the lives of children undergoing treatment, to the most complex, such as the promotion of clinical research in our country, psychosocial support for the family of the sick child and the issues of survival of children and adolescents who have been diagnosed with cancer, the Urban Non-Profit Society KARKINAKI believes that childhood and adolescent cancer should cease to be a taboo and that we should seek for as many supporters as possible so that every child can have access to high-quality care, effective treatment and, ultimately, the right to life.

Agigma Zois

AGGIGMA ZOIS is a Civil Non-Profit Company registered in the National Register of Non-Profit Private Sector Bodies and the Special Register of Voluntary Non-Governmental Organizations. It provides free medical, psychological, and social support to cancer patients and their families. Our message and vision are: “I love Life! I am Informed & I Prevent,” and we aim to spread our message through actions.

Hellenic Cystic Fibrosis Association (H.C.F.A.)

Hellenic Cystic Fibrosis Association (H.C.F.A.) is a non-profit patient association established in 1983 in Athens, representing all patients in Greece. The Association is a member and the representative of Greece in the international and European organizations “Cystic Fibrosis Worldwide” (C.F.W.) and “Cystic Fibrosis Europe” (C.F.E.) and a founding member of the Greek Alliance for Rare Diseases.

Its members are active parents, relatives, and friends of children with Cystic Fibrosis, adult patients, doctors, and scientists of other specialties who wish to contribute to the association’s goals.

The aim of the Association is:

The defense, in every legal way, of the self-evident right of people suffering from Cystic Fibrosis to care and social welfare
Ensuring the necessary infrastructure and conditions in the organized hospital centers where patients with Cystic Fibrosis are monitored
The resolution of problems concerning the patients’ rights for hospitalization, treatment, care, and benefits they are entitled to
Raising public awareness aiming at timely prevention and providing any support for patients and their families

Hellenic Friedreich’s Ataxia Association

Hellenic Friedreich’s Ataxia Association is the collective expression in Greece of the individual effort and struggle of patients suffering from this rare neurological disease and their families.

Our vision is a world free from the devastating disease of Friedrich Ataxia. Our actions aim to meet our patients’ needs and turn our disability and that of our children into hope.

Hellenic Association Idiopathic Pulmonary Fibrosis – IPF “Lungs of Life”

The non-profit association was founded in August 2016 by a group of patients to meet the need for representation to collective bodies, associations, and federations inside and outside Greece and in public social insurance, hospital, and professional health providers.

The objectives of the Association are:

To cease the isolation of the sufferers
To have a body that provides in a simple way information about this condition without difficult-to-understand medical terms
To inform in collaboration with the scientific associations about the characteristics and symptoms of the disease, as early and valid diagnosis saves lives while ignorance kills
To make known the problems that patients confront in their daily lives, both at personal, social, work, and family levels, as well as the adverse effects on their life quality.
To secure our rights presented in the European Charter of Patients’ Rights, which all the countries of the European Union have ratified, including Greece.

* To inform patients throughout Greece about their rights and the efforts of the Association to increase participation and support of as many patients as possible

Association of Parents of Children and Young People with Diabetes

The Association of Parents of Children and Young People with Diabetes

The Association of Parents of Children and Young People with Diabetes was established in 1990 in Thessaloniki. It has approximately 450-500 members from all over Northern Greece and is a non-profit association maintained only by its members’ contributions and donations. Full members are parents of children and young people living with diabetes, who participate on the Board of Directors.

It is also open to pediatricians, doctors, nurses, psychologists, social workers, and health professionals who deal with this condition. It covers all Northern Greece and also throughout the country and abroad. It is a member of the Hellenic Diabetes Federation (ELODI).

The purpose of the Association is to inform, promote and organize scientific and social events, to educate children and their parents on how to deal with the disease, and to solve the psychological, social, and economic problems that occur due to diabetes.

Our goal is to inform and highlight the obligation of the State, the necessity of taking preventive measures, as well as the provision of complete medical and pharmaceutical coverage by the competent State and social agencies.

We want to be companions in the problems and difficulties of each family, child, and young person personally.

Our actions aim to provide psychological support groups for parents and young people, nutrition, education, and exercise seminars. We have been collaborating with the YMCA summer camps since 1995 to ensure our children’s participation in them, where they learn to self-regulate with the help of doctors, nurses, and dieticians. In addition, we organize initiatives for communicating with our members, promoting solidarity and cooperation development. Every year, on World Diabetes Day, we organize a conference with the participation of doctors, psychologists, nutritionists, and health professionals.

Association of Heart Patients Navy and Coast Guard Officers, and Friends

The humanitarian non-profit Association was founded in 2010, and its aims include:

Immediate and continuous assistance of its members and Friends
Medical assistance to its members – heart patients and seriously ill – by blood donations for them or their relatives, guiding and supporting them in their treatment.
The collection, storage, and safekeeping of blood in two (2) Blood Banks which it maintains for the lifelong education of patients and their relatives.

Hereditary Angioedema of Greece

Hereditary Angioedema of Greece is an association founded in 2021 with a vision to support patients and parents of children with hereditary angioedema.

It is a people’s initiative that aims to claim the rights of the sufferers both at the national and the global level.

The original purpose of the Association will be the continuous effort for the inclusion of people with hereditary angioedema in the production process and the organization of events with the aim of raising awareness of the government and public opinion on their problems and their possibilities. Moreover, the utilization of individuals for professional rehabilitation and improvement of their professional, economic, educational, and generally cultural level. The cooperation with corresponding Associations of the whole world for the realization of its purposes, and the participation with representatives in international conferences that support these purposes.

Pancretan Association of Parents and Friends of Children with Cancer “ILIAHTIDA”

The Pancretan Association of Parents and Friends of Children with Cancer “ILIAHTIDA” was founded by concerned citizens in 1992 in Heraklion, Crete.

The Association’s goals are: To offer moral and material support and care for children with cancer from Crete or those treated in hospitals in Crete and for their families.
To inform and raise public awareness about the issue of childhood cancer and to strengthen, promote and spread the idea of offering help to children with cancer.
To organize cultural events that strengthen the union morally and financially.

Panhellenic Diabetes Union (PED)

The Panhellenic Diabetes Union is the first Diabetes Union in Greece. It was founded in 1979 by Mr. Giorgos Fragoulakis with the help and support of the late professor Sotirios Raptis.

From the founding of EKEDI (National Centre for Research, Prevention, and Treatment of Diabetes and its Complications) until its repeal, PED had been a regular member of its nine-member Board of Directors.

The endeavor of providing information about Diabetes has initially been challenging. Today, however, 50 years after the establishment of PED, there is a plethora of information, to the point where there may be an influx of misinformation on many occasions. The goal of the Panhellenic Diabetes Association is to provide valid information to people with Diabetes.

Particularly on our website, one can quickly locate all the Hospitals with Diabetes Clinics and Diabetes Centers, which one can visit for free. It also includes articles and interviews with renowned scientists on the issues of Diabetes and related diseases, extracted from the magazine “Diabetes Care for All,” published by our Federation.

Panhellenic Federation of Associations of Patients, Parents, Guardians and Friends of children with rheumatic diseases “REUMAZIN”

The goals of the ReumaZin federation are the following:

The unification of the country’s rheumatic patients’ Associations into a single legal entity, the Federation, and the coordination of its members’ actions.
The submission of proposals for legislative changes that will improve the level of health care in the country, by implementing decisions of the respective Governing Bodies.
The defense by all legal means of the moral, social, legal, and material interests of patients and their families.
Ensuring the passing of legislative regulations for health promotion and further developing a good network of health services for the whole country, including education, training, employment, retirement, insurance, and decent living standards.
The cooperation of the Federation with doctors and health professionals, lawyers, sociologists, and other social scientists, who wish to contribute voluntarily to the fulfillment of Reumazin’s goals.

Greek Lysosomal Association “Solidarity”

The Greek Lysosomal Association “Solidarity” is a non-profit organization founded in 1997 by patients with Gaucher disease, parents, friends, and scientists to:

Meeting patients’ need to communicate and support each other
Raising awareness within the medical community and broader public about these rare diseases
Claiming patients’ rights to free treatment and diagnosis, as well as improving their quality of life

The Lysosomal storage diseases (LSDs) are a large class of genetically inherited diseases with a total incidence of 1:700 births, numbering about 50 rare metabolic diseases, causing disturbances in the function of a lysosomal enzyme, resulting in the accumulation of substances (substrates – targets) with consequent chronic and progressive deterioration of the cells, tissues, and organs affected.

Panhellenic Association of Neurofibromatosis Patients & Friends – “Life with N.F.”

The Panhellenic Association of Patients and Friends of Neurofibromatosis Patients “Life with N.F.” is the first association for Neurofibromatosis in Greece, founded in 2013 at the initiative of patients and caregivers. Its objectives are to support and inform patients and their families, to claim their equal access to life, to create clinics for the disease, to create an institutional framework to upgrade the quality of life of patients and to educate health professionals about the disease. Also, informing the competent state services and private bodies about the Association’s requests, solving patients’ problems, and enlightening wider society regarding diagnosis, valid prevention, proper guidance to deal with the problems faced by sufferers, as well as combating the social exclusion of people with this disease.

Panhellenic Association of Patients and Friends of Familial Hypercholesterolemia – LDL Greece

The “Panhellenic Association of Patients and Friends of Patients with Familial Hypercholesterolemia-LDL Greece” has a non-profit character, with the primary purpose of claiming and providing every possible scientific, social, economic and moral support to patients suffering from familial hypercholesterolemia, and their families. It is recognized by the Athens Court of First Instance.

Its mission is:

The participation and cooperation with scientific organizations, as well as with other associations and related bodies, which deal in any way with the issue of familial hypercholesterolemia and the effective treatment of the condition with new improved methods of treatment, diagnosis and detection of carriers.
The information of the general population, and especially the community related to the disease, in order to raise awareness about this “hidden”, although life-threatening disease
The protection of patients’ rights and the claim by the State of active support to patients and their families

Panhellenic Association of Individuals and Parents of Children with Congenital Orthoanal Anomalies

Our newly established Association represents individuals and parents of children with congenital anorectal malformations. 1 out of 5,000 infants is born with anorectal malformation. This percentage corresponds to about 17 newborns annually in Greece. Our goal is to inform the public about the condition and to support and defend the rights of patients and parents on this challenging road that includes multiple surgeries and lifelong interventions on patients’ bodies.

Patients often deal with ignorance from the environment, the medical community, and social stigma.

The image representing our Association is an infant with his hands covering the area affected by the condition. One palm is closed, showing the strength and struggle of each patient, while the other is open, as a symbol of rare diseases.

Panhellenic Association for the Protection, Information & Assistance of Children with Heart Disease – “The Heart of the Child”

The Panhellenic Association for the Protection, Information & Assistance of Children with Heart Disease, with the distinctive title “The Heart of the Child”, is a private Nonprofit Association of Non-Profit Content, and was officially founded in 1983 by parents of children suffering from heart disease with the aim of providing moral, psychological, material support and information to children’s families.

The aims of the Association are:

The enhancement of the scientific potential and the improvement of technical equipment in our country, in order to further improve scientific research, laboratory capabilities and treatment of children suffering from congenital heart diseases.
The recognition by social insurance (IKA, OGA, TEBE, etc.) of the high cost of hospitalization and the coverage of the relevant costs required for the treatment of children with MS in Greece mainly or even abroad, when necessary
The modernization of Greek legislation concerning the social status and working opportunities of children with MS who have been cured

The above objectives are achieved:

-With lectures, studies, fundraisings, and appearance before public authorities

-By cooperating with natural or legal persons who have the same or similar purposes

-By any moral and legal means

-By cooperating with corresponding bodies of the European Union as well as with humanitarian and medical services in Europe and beyond.

Hellenic Liver Patient Association “Prometheus”

The Hellenic Liver Patients Association “Prometheus” was founded and has been active since 2012 and is the first association of patients with liver diseases. As an organization, it aims to bridge the gap and inequalities that arise between patients and state care in the field of public health. Our mission is to give priority to patients and especially to socially and economically vulnerable groups of the population who face barriers to access public healthcare, helping to overcome these barriers.

“KRIKOS ZOIS Society of Patients and Friends of Patients with Inherited Metabolic Disease

The Society of Patients and Friends of Patients with Inherited Metabolic Disease “Krikos Zois” is an association with charitable character, based in Thessaloniki. It was founded in March 2007 on the initiative of Persephone Avgoustidou-Savvopoulou, Professor Emeritus of the Medical School of Aristotle University of Thessaloniki.

KRIKOS ZOIS aims to provide every possible assistance to patients suffering from inherited metabolic disorders. During its operation, it developed multifaceted activity with interventions in organizations, participation in international conferences and forums, cooperation with other associations and organization of events. It is an active member of P.E.S.P.A. (Panhellenic Association of Rare Diseases) and EURORDIS (European Organization for Rare Disorders) and participates in international research programs.

Inherited Metabolic Diseases are rare but high in number as they constitute 20% of rare diseases. These are chronic diseases, with patients mainly children, with very difficult prognosis and tragic consequences for undiagnosed or improperly monitored patients. The main problem is that they remain relatively unknown to both the public and official health bodies. This has multiple consequences both on the quality of care provided and on the diagnosis as there may be patients with an Inherited Hereditary Metabolic Disease that are not aware of it. The aim of the association is to provide every possible scientific, social, moral, and financial support to children suffering from hereditary metabolic diseases and their families. KRIKOS ZOIS is financially supported by membership fees and private donations.

Association of Parents and Guardians of Children with Congenital Heart Diseases “Agia Sophia”

The creation of the Association of Parents and Guardians of Children with Congenital Heart Diseases “Agia Sophia” began, informally in October 2011, when the operation of the only public Pediatric Cardiac Surgery Center in Greece at the “Agia Sophia” Children’s Hospital was terminated suddenly and without sufficient justification.

Parents of children suffering from heart disease, a few initially, who very quickly became many, immediately and spontaneously began a struggle for the restoration of the truth and the reopening of the Center. Protests to officials, publicizing the problem in the media, issuing press releases, going to court are, indicatively, some of our actions. In our effort we realized that our struggle would be more effective if we were organized. Thus, the “Association of Parents and Guardians of Children with Congenital Heart Diseases “Agia Sophia” was born.

The Association of Parents and Guardians of Children with Congenital Heart Diseases “Agia Sophia” was created to support in every way children suffering from congenital heart disease and their families.

For us, a prerequisite is the uninterrupted operation of the only public Pediatric Cardiac Surgery Center in Greece at the “Agia Sophia” Children’s Hospital, which we support in every possible way. We fight because we believe that every child should have, free of charge, the medical care they need in Greece and, if this is not possible, be able to go abroad, without cutting corners to ensure their health.

In particular, the statute’s purposes for our association are:

The protection by any legal means of the moral, social, and material interests of children with congenital heart diseases and their parents and guardians
The pursuit and claim of uninterrupted and optimal operation of the only public Pediatric Cardiac Surgery Center in the country, which operates at the Children’s Hospital “Agia Sophia” under the name “Special Center for the Treatment of Congenital Heart Diseases in Children” (E.K.A.S.K.A.P.)
The pursuit and claim of the necessary staffing of the above Pediatric Cardiac Surgery Center in medical and nursing staff, so that young patients have the best possible medical and nursing treatment
The pursuit of the fastest possible surgical treatment of heart patients with a corresponding reduction of the waiting list to the minimum possible
The aim of ensuring psychological help and support for both young heart patients and their parents and guardians

Association of Parents and Guardians of Children with Chronic Rheumatic Diseases

The Association of Parents and Guardians of Children with Chronic Rheumatic Diseases is a non-governmental organization founded in 1989. Its purpose is to actively support sick children and their families, with the aim of improving their health and quality of life, as well as demanding from the State the best possible care and treatment for each affected child.

This means:

To have the best possible information on our child’s disease: oral (private conversations with the attending physicians, open speeches, educational seminars, etc.), written (informative leaflets) or electronic always through valid websites. Indicatively, we mention printo.it site, where you can find information in Greek about pediatric rheumatic diseases as well as other useful information.
Systematic training by specialized physiotherapists, parents, guardians, and our children themselves on how to perform physiotherapy exercises. The exercises should be done systematically and long-term to achieve complete recovery of affected joints and prevent permanent disabilities.

To ensure the proper functioning of the Paediatric Immunology and Rheumatology Reference Center of the First Pediatric Clinic of the Aristotle University of Thessaloniki at the Ippokrateio General Hospital of Thessaloniki, so that it is equal to all the corresponding international Reference Centers

* To promote the problem of Chronic Childhood Rheumatic Diseases and its social implications to the public and to any competent state or other body in Greece or abroad in order to raise their awareness.

Association of Parents and Friends of People with Angelman Syndrome

The Association of Parents and Friends of People with Angelman Syndrome was founded in 2018 with the main objectives of supporting families caring for members suffering from Angelman Syndrome, defending the fundamental rights of these people, as well as fully harmonizing the Greek legislative framework with the Community and International for the development of quality living and development conditions.

Association of Cancer Patients and Rare Diseases of Northern Evros “Together for Life”

Our name indicates our goal: to fight uncompromisingly, with all our might, with determination and vigor, collectively and in a spirit of solidarity (“TOGETHER”), for our inalienable right “FOR LIFE”. For our definitive victory over the disease of cancer, a disease incurable but not incurable. And where this is unfortunately not possible, to offer the best possible result, with the aim of ensuring as much as possible the quality of life and human dignity. We stand firmly with our fellow human beings suffering from cancer. For their life, our lives and, ultimately, the lives of all of us!

Association of Cancer Patients – Volunteers – Friends – Doctors “K.E.F.I.”

The K.E.F.I. Association was founded in 2004 in Athens, with the aim of offering emotional, psychological, and social support to oncology patients and their family members, as well as informing and sensitizing society about cancer. This objective shall be achieved by the creation of:

Basic training program for young volunteers, lasting one year, with the cooperation and support of the Center for Psychotherapy and Counseling “WILHELM REICH”
Discussion groups and sharing experiences
Group psychological support
Individual psychological support
Creative employment groups

the organization of:

Speeches
Workshops for prevention and information on scientific developments in the treatment of cancer by specialized doctors and scientists
Training seminars for welfare and social work volunteers
Artistic and cultural events

updating:

On special social benefits for oncology patients
On the insurance rights provided by the Insurance Bodies in favor of oncology patients
On society-related issues related to cancer (such as prevention, smoking, social prejudices, etc.)
Social and welfare care at home for oncology patients
Information and psychological – emotional support of oncology patients in the hospital or at home and their family members

Huntington Disease Association of Greece

The Association of Rheumatic Patients of Crete

The Association of Rheumatic Patients of Crete was founded in 2003 and covers all prefectures of Crete. Our members are patients, their families, friends, as well as volunteers who wish to contribute to our work.

Our goals are:

Informing members and society on prevention, new treatment, and rehabilitation methods for rheumatic patients
Claiming better quality health services, organizing the necessary infrastructure, and staffing them with properly trained providers of specialized services
Support and mutual help of our members and their family environment
Promotion of research on etiopathogenesis and treatment of rheumatic diseases

Butterfly, Bone Health Society

The Butterfly Bone Health Society was founded in 1999 and is the only recognized association that is addressed to the public and has as its primary goal to inform about skeletal health, nutrition, exercise, psychology, prevention, and treatment of related diseases.

The Society has developed action and work within the borders of Attica and throughout Greece. It maintains an excellent collaboration with scientific associations dealing with osteoporosis and the Laboratory for Research of Musculoskeletal Diseases of the Medical School of the University of Athens.

Collaborating with the above bodies, it conducts epidemiological and other studies to collect and process data on this chronic disease.

Its activity extends to information and counseling through seminars, conferences, and brochures, which analyze essential skeletal health issues.

The Association of Rheumatic Patients of Patras

The Association of Rheumatic Patients of Patras was founded and operates since 2014. It is a non-profit association with the aim of providing all possible assistance – scientific, social, and moral – to vulnerable groups with autoimmune rheumatic diseases.
The association has the following objectives:
● Informing the public, members and any competent body on prevention, treatment and rehabilitation of rheumatological diseases
● Organization of events, special seminars, lectures to raise awareness and enlighten the public
● Support to patients with rheumatic diseases and communication with state bodies to solve problems and assertive attitude towards those responsible bodies for the reinforcement and support of each existing research, diagnosis, and treatment unit.

Association of Friends of Patients with Primary Immunodeficiencies & Pediatric Immunology

The Association “ARMONIA” was born out of the need to raise awareness of the medical community and the public about diseases of the immune system. In collaboration with scientists in the field and other patient organizations, it tries to offer support to patients and their families, while defending patients’ rights, especially regarding access to health care and the special conditions of hospitalization they need. It also looks forward to dynamic intervention for good cooperation of patients with specialized hospitals, as well as with other relevant associations, and generally bodies or individuals with common goals and objectives.

Among the activities of the Association are Information Campaigns, such as the information campaign for the rights of people with immunodeficiency and patients with rare diseases, as it is a member of P.E. S.P.A. (Panhellenic Association of Rare Diseases) and a probationary member of EURORDIS (Rare Diseases Europe) and IPOPI (International Patient Organization for Primary Immunodeficiencies).

Association “Family Alliance of Greece against V.H.L. disease.”

The V.H.L. Family – Alliance is the main resource, information exchange and support center for V.H.L. disease (Von Hippel-Lindau) for the benefit of patients, and a Reference Center for caregivers, researchers, clinicians and the public. It was founded in 1993 as a voluntary organization with regional chapters and is associated with approximately 90% of all V.H.L. patients diagnosed worldwide.