Rare Diseases Greece / RDG is a non-profit Association based in Athens covering the entire Greek territory, with 30 members – associations, unions, and civic, non-profit organizations representing patients with rare diseases throughout the country.
With rare patients representing 3.5-5.9% of the population in Greece, the need for cooperation of the national Patient Organizations covering patients with rare diseases was imperative to achieve the best representation and joint advocacy of the right of equal and universal access to health services for people with rare diseases.
It is the largest body representing rare patients and their needs in Greece, with members in committees and working groups, such as the Committee for Rare Diseases, the Registry Working Group for Rare Diseases and Treatment Protocols, as well as the Pharmaceutical Expenditure Committee of the Greek Ministry of Health.
At the same time, it is the official representative body of Greece abroad, a member of the European Organization for Rare Diseases (EURORDIS), and the Council of National Associations of Europe through the Council of National Alliances.
PILLARS OF ADVOCACY
Empowering Rare Voices
can become Associations and Civil Non-Profit Companies (AMKE) of patients whose majority of the members of the Board of Directors are patients, parents and guardians, first-degree relatives, or legal assistants of patients, and:
- Either are explicitly identified in their statute as Associations or Civil Non-Profit Companies (AMKE) of patients suffering from rare conditions or diseases, parents, guardians, first-degree relatives, or legal assistants of patients suffering from rare disorders or illnesses.
- Or are identified in their statute as Associations of non-rare disease sufferers if they have a specific and reasonable interest in rare diseases as there is a sub-category of the disease or condition which falls under the concept of rare diseases or diseases.
may become legal entities of a public interest nature, such as patient support associations that do not include patients with rare diseases, non-governmental organizations of humanitarian action, scientific companies, universities, and research institutions, as well as other bodies that, through their actions, strengthen and promote the work of the Association and wish to cooperate with it.
that may be declared by the decision of the Board of Directors include legal entities, or natural persons who offer or have offered their services to meet the objectives of the Association.
Leveraging the momentum for a comprehensive Rare Disease Strategy
MEMBERS OF THE BOARD OF DIRECTORS
Dimitrios Athanasiou holds a BA in Business Administraon and an MBA in Financial Management.
He speaks three European languages and has more than 25 years of experience with internaonal business projects, working in various countries in consulng, developing, and reorganizing companies. When his son was diagnosed with Duchenne Muscular Dystrophy, a fatal and incurable rare disease, he became a strong internaonal paent advocate in Duchenne and Rare Diseases.
Having a passionate personality and technocrac background, he educated himself with basic rare disease and advocacy knowledge via the EURORDIS Summer School and then with the 14-month Paent Expert Course of the European Paent Academy of Therapeuc Innovaon (EUPATI) acquiring basic biotech and regulatory knowledge, where he served as a Member of EUPATI’s Course Commitee for the next year, represenng the paent voice. Being an EUPATI fellow, he established the Greek EUPATI Naonal Liaison Team.
Locally in Greece was the Duchenne paent representave of MDA HELLAS, created an acve network of paent advocates, and became a board member of the World Duchenne Organizaon (WDO) promong a vibrant network of paent organizaons where children with DMD will have access to the best care irrelevant to where they live. He was a board member of the European Paent Forum EPF, the umbrella of the paent organizaons in Europe. He is a founding member and serves on the Board of the Greek Paents Associaon the 95 Rare Alliance Greece and is the chair of Rare Diseases Greece.
In his role as a paent advocate, he interacts with Regulators, HTA authories, Industry, and Academia promong the rights of paents with rare diseases to have access to the best care possible and to new, safe, and affordable drugs for rare diseases.
As a strong and commited paent advocate for DMD and rare diseases, he serves the paent community through various roles. He was a board member of EPF, a EURORDIS EPAC/TAG member, served on the Board of the European Forum for Good Clinical Pracce (EFGCP), Co-Chairing the Children Medicines Working Party (CMWP), Paent Advisor in TREAT-NMD Advisory Commitee for Therapeucs (TACT), DIA’s Program Commitee Member and many others.
In 2014 he was nominated paent expert by EMA for DMD and has parcipated in several of EMA's Scienfic Advice, SAG, Protocol Assistance, and CHMP pilot meengs for Duchenne, providing the essenal paent representave perspecve when companies request regulatory advice or approval. He was a PDCO member in the European Medicines Agency ll 2023 and is currently a PCWP member.
Kate Theocharis- Vice president A
Born in Athens and grew up in Johannesburg South Africa. English Language Teacher
in the private sector.
Gaucher patient and Founder of the Panhellenic Association of Patients and Friends
Suffering from Lysosomal Diseases “The Solidarity” which represents patients for
more than 65 Lysosomal Hereditary and Degenerate Diseases
Represents the Association in Eurordis, International Gaucher Alliance (IGA) ,Pompe
International and MPS Diseases International.
Member of the Gaucher Disease Task Force of the European Hematology
Association / member of MetabERN and EWGDD (European Working Group for
Gaucher Disease).
Has been trained in the Greek Patient Academy and taken part in many workshops
concerning clinical trials, Health Technology Assessment ,Patient Association
Development .Leader of many association’s projects , and takes part in Projects of
the International Gaucher Alliance IGA
such as IGA Stragetic plan 2024-2029 και Older Generation Project .
In relation to the Centers of Expertise, participated in the National Debate ( the
Social Affairs Committee) on behalf of ’ Solidarity ‘ association in 2017 and finally
was a keynote speaker in the meeting of the Ministry of Health concerning the
newly founded offices for the protection of the rights of health care recipients in
2018.
1. Personal Information
Commissioned with the Hellenic Armed Forces Legal Corps, in 1998. Lieutenant Colonel (since 2017), Hellenic Army, born in Katerini, Greece in 1976, married to Eleni, a math teacher for children with disabilities. He is the proud father of Maya (13) and Stavros (11), a hero of life.
2. Degrees - Diplomas
2.1 Academic
o Master degree in Specialized Public Law (2012), Université de Bordeaux Montesquieu IV, Bordeaux, Joint Program with the Law School of Kapodistrian University of Athens, Greece.
o Master in Business Administration (MBA) (2011), Hellenic Open University, Patra, Greece.
o Law Degree (1998), Law School, Aristotle University of Thessaloniki, Greece.
2.2 Military
o Military Academy of Corps Officers (1998), Legal Officer with the rank of 1st Lieutenant.
o Hellenic National Defense General Staff / School of Military Advisors, Legal advisor’s course (2011), Legal Directors’ course (2009), 1st Lieutenants’ course (2001).
o NATO School Oberammergau, NATO Comprehensive Operations Planning Course (2017) (certified Planner), NATO Joint Targeting Staff Course and Target Engagement Authority (2017) (certified Targeteer).
o Supreme Headquarters Allied Powers Europe, NATO Allied Command Operations Combat Readiness Evaluations Course (certified Evaluator).
2.3 Professional Legal Training
o NATO Cooperative Cyber Defense Center of Excellence, International Law of Cyber Operations (2015), Tallinn, Estonia
o International Institute of Humanitarian Law, Naval Operations and the Law (2015), San Remo, Italy
o NATO School, Oberammergau, NATO Operational Law Course (2014), NATO Legal Advisors Course (2012), Oberammergau, Germany
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2.4 Distance Learning Legal Training
NATO Supreme Allied Command Transformation, Norfolk, VA distance learning training on: Legal Aspects of Combatting Terrorism, Defence against Terrorism, NATO Rules of Engagement, Children and Armed Conflict, European Security and Defense Policy.
3. Employment
Aug 2022 – present : Conseiller Juridique / Ambassade de Grèce à Paris / Bureau Attaché de défense
Legal Advisor to the Ambassador and the Attaché de Defense. Responsible for negotiating, drafting and following international bilateral agreements.
Nov 2013 – Aug 2022: Senior Legal Advisor and Director/ NATO Rapid Deployable Corps Greece
▪ Provision of professional legal advice to the military hierarchy on legal matters during peacetime and on legal aspects in planning and conducting military operations.
▪ Heading a NATO legal office in NATO exercises, member of planning groups and boards advising on international humanitarian law, on the use of force, on international administrative law, on the law of international organizations, on fiscal privileges and immunities, on the status of the forces (negotiating and concluding agreements), on human rights law and on criminal and disciplinary investigations.
▪ Accredited legal evaluator and mentor having participated in NATO evaluations as a legal evaluator, evaluating NATO military Headquarters, across Europe, on specific legal criteria. Oct 1998 – Nov 2013: Legal Advisor / Hellenic Armed Forces A balanced legal career within the Hellenic Armed Forces appointed at different levels of command up to the Army General Staff advising on different legal areas with a focus on military law, administrative law, civilian employment law, domestic and international law applicable to the operations of the armed forces, human rights and privacy law, contract law and resource management law.
2019 – Present: NATO School Oberammergau
▪ Lecturer and Exercise leader at “NATO Operations Law Course” both in resident and distance learning courses;
▪ Lecturer on “Legal Aspects in the Targeting process” and on “Legal Matters in Planning Military Operations”.
2015 – Present: Hellenic Supreme Joint War College
Lecturer on the field of Legal Matters in Military Operations, on the conduct of hostilities, on the use of force, and on the EU Common Security and Defense Policy Operations Planning Course.
2014 – Present: Multinational Peace Support Operations Training Centre (Kristoni, Greece):
▪ Organizer (design, schedule, content) and lecturer in the “International Humanitarian Law Course” that has been established in MPSOTC.
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▪ Lecturer on the Law of Armed Conflicts, Legal Aspects of Information Operations, Peace Support Operations from the Jus ad Bellum in the Jus in Bello, Legal Aspects in Borders security and refugees.
2014 - 2017: Hellenic Air Force / Military Academy for Admin NCOs:
Lecturer on the field of Constitutional, Public and Administrative Law to military cadets (one semester per academic year).
4. List of Publications
1. The Handbook on the Laws of Armed Conflict, Karatzias/Zalidis/Lioutas, Sakkoulas, 2022
2. Legal aspects in the Targeting Process (2019), NATO School Oberammergau, Teaching Material as part of the NATO Operations Law Course Student Handout (scholarly work);
3. The Status of International Military Headquarters under the scope of NATO SOFA (2019), published in NATO Legal Matters Magazine issue 3;
4. Operating under Art. 5 of the Washington Treaty (2018), Presented during the ACO 2018 Legal Advisors Conference, published in the NRDC-GR Herald Magazine (issue …);
5. Legal Aspects in Border Security (2017), Multinational Peace Support Operations training Centre, Teaching material as part of the Border Security Course (scholarly work);
6. A legal response to security threats coming from NATO’s southern flank (2017), 2017 ACO Legal Advisors Conference, Ronda, Spain;
7. The role of Legal Advisor in NATO (in Greek) (2017), presented during the 1st Hellenic Legal Advisors Conference, Athens and published in the Conferences proceedings by the Hellenic National Defense General Staff;
8. Direct Participation of civilians in cyber hostilities in times of armed conflict (2016), presented in the 2016 NRDC-GR Legal Seminar;
9. The interoperability between International Humanitarian Law and Human Rights Law in times of armed conflicts (2015), NRDC-GR 2015 Legal Conference;
10. Conflict classification in Ukraine. Legal analysis of Russian actions in Crimea and Eastern Ukraine (2015), NRDC-GR Ukraine Seminar 2015
11. The role of legal Advisor in Operational Planning Process (2014), Presented in the NRDC-GR 2014 Legal Conference, published in the NRDC-GR Herald Magazine (issue ….);
12. The legal regime applicable to Targeting. The military objective in the context of contemporary conflicts.
13. NATOs’ Legal Architecture and Host Nation Support Agreements (2016), NRDC-GR Host Nation Support Seminar 2016
14. Protection of civilians in times of armed conflicts, a NATO perspective (2020), NRDC-GR Protection of Civilians Seminar, Feb 2020
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15. La problématique de l’application des droits de l’homme aux membres des forces armées en France et en Grèce dans le cadre de la Convention Européenne des Droits de l’Homme, Universite Montesquieu Bordeaux IV Faculté de Droit, MASTER II Droit Public Specialise, Bordeaux 2012 (dissertation)
16. The relation between corporate governance and risk management during the 2008 financial crisis. The case of financial institutions, Hellenic Open University, MBA, Patra, March 2011 (dissertation)
Social work / Benevolent
Patient advocate on rare pediatric diseases.
▪ Hellenic Friedreich’s Ataxia Association. President of the Board.
▪ Rare Diseases Greece Federation. Vice-President of the Board.
▪ Euro-ataxia Federation. Member of the Board of Directors
Languages
▪ English: Business fluent, (Proficiency in English, University of Michigan)
▪ French: Proficient, (Diplôme Approfondi de Langue Française, DALF C1)
TEAM
Research Director and head of the Artificial Intelligence (AI) Lab SKEL (https://www.skel.ai/). More than 30 years research experience in data analytics, developing novel machine learning and AI methods. Some of this work in the area of bioinformatics and computational biology. Volunteer chairman of the board of the Duchenne Data Foundation (DDF - https://www.duchennedatafoundation.org/). DDF is a patient-driven worldwide collaboration with the vision to mobilize data to improve the life of patients with DMD and BMD (Becker Muscular Dystrophies).
Georgia Moraiti holds a MSc in Public Health, with a special focus on chronic diseases
and health behaviours. She is an experienced social worker in the field of advocacy
and the support of patients with rare diseases. For the last 9 years, she has been
working in the field of rare diseases, 7 of which in Neuromuscular Disorders. Has
extensive experience in patient management, needs assessment, counselling, and
capacity building. Has been involved for many years in advocacy and consultation
activities with other health professionals on biopsychosocial factors and their effects
on health and quality of life. In her role as a patient advocate supporting the patient
community, she also performs desk research on patient social services rights and
access, and she supports the community activities in the interaction with the State
Agencies, Ministries and Pharmaceutical Companies. Georgia’s experience covers
communication and raising awareness activities, the design and organisation of
scientific conferences and social activities. Prior to her involvement in patient
organizations, she had worked as a social worker in a nursing home and in a
municipal social service. She has a solid background and interest in scientific
research on patient quality of life and social and psychological disease burden of
patients with rare diseases. Her native language is Greek, and she is fluent in English.
Vasiliki Palamouti is a Molecular Biologist & Geneticist, with Postgraduate Studies in Human
Reproduction and Neonatology.
She gained expertise in Rare Diseases, Orphan & Innovative Medicines, through diverse experiences and roles in the pharmaceutical sector. She was actively engaged with Key Stakeholders, Physicians, Scientists and patient associations.
Vasiliki has a strong interest in scientific research, market analysis and identification of
promising therapeutic opportunities. She is driven by a genuine desire to make a positive impact on the medical field, focusing in rare diseases and enabling patients’ access to advancements in healthcare.
