40 years of the Association

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40 years of the Association HCFA TEAM February 15, 2023

Our history

Woe to the child whose kiss on his forehead tastes salty, for he is enchanted and will soon die,” said a 1700s children’s book. Until the 1980s the disease had a very low survival rate. 75% of patients died in childhood. The disease was unknown and there were few treatments.

In May 1983, parents of children with Cystic Fibrosis took the initiative and founded the Panhellenic Cystic Fibrosis Association, after the encouragement of Mr. Adam George, a paediatrician at the C.I. clinic of the Aghia Sophia Children’s Hospital.

The parents of young patients needed an association through which they could demand better access to the scarce drugs for the disease, defend their children’s rights, improve their quality of life, and make an unknown disease known to the public and the state. Two decades after the founding of the Association, more and more patients managed to survive and grow into adulthood. The first adult patients were elected to the Board of Directors in 2001. Since then and until today, 40 years later, patients and parents have been working together and fighting for a better quality of life.

During its 40 years of operation, the Hellenic Cystic Fibrosis Association has managed to change the “map” of the disease in Greece and to become one of the most recognized patient associations in Greece and abroad for its actions and its work for the health of patients with Cystic Fibrosis!

From yesterday to today

1938

The mysterious disease from which children lose their lives was first described by Dr. Dorothy Andersen as "Fibrocystic Pancreatic Disease".

1983

24 parents of children with CF found the Hellenic Cystic Fibrosis Association under the name "Hellenic Society for Cystic Fibrosis" (EIK) to claim a better quality of life for their children.

1984
  • The members of the Board of Directors of the Association start to participate in European Cystic Fibrosis conferences.
  • For the first time, the Association is organizing a scientific conference with speakers who are experts in the field, describing the latest developments of the disease. Since then, the scientific conference has become an institution and is organized by the Association every year.
1986
  • Prenatal screening is launched in Greece and the first healthy child is born after prenatal screening.
  • The Association covers the costs of research staff for the continuation of prenatal screening.
1987

The Association assists in the creation of an information leaflet on the disease.

1989
  • The CF Department of the Aghia Sophia Children's Hospital is recognised and becomes part of the NHS as a stand-alone department.
  • The pioneers of the Association are a source of inspiration and thus the "Association of Parents and Guardians of Northern Greece of Children Suffering from Fibrous Cystic Disease" is founded, which is in constant cooperation with the Panhellenic Association of CF.
1990
  • Achieved a reduced 10% drug adherence of patients with CF.
  • It is proposed that the disease be included in incurable and chronic diseases.
  • Efforts are being made to ensure the uninterrupted provision of disability benefit to CF patients.
1993
  • The operation of the Adult CF Department at the 5th Pulmonology Clinic of Sismanoglio starts in collaboration with the Children's CF Department of the Aghia Sophia Hospital.
  • The Association covers the monthly training costs of the attending pulmonologist of the Sismanoglio Hospital in Brompton, England
  • The Cismanoglio CF Unit was recognized by the Central Health Council in 2004.
1994

The Association funds a research project at the Department of Molecular Biology of the 1st University Clinic of the University of Athens.

1995

Integration of CF patients into the disabled population is achieved.

1997

The first inhaled drug for Cystic Fibrosis is launched in Greece.

1999

The admission of patients with CF to the University Institutions without national examinations is achieved.

2001

For the first time, in addition to parents, patients with Cystic Fibrosis are elected as members of the Board of Directors.

2003
  • The Association is registered as a member and representative of Greece in the European CF Europe Association.
  • The first website of the Association is created.
2005

The Association is registered as a member of the Panhellenic Association of Rare Diseases (PESPA).

2007
  • The operation of the Adult CF Department of the "Papanikolaou" Hospital of Thessaloniki begins.
  • The Association participates in the drafting committee of the National Action Plan for Rare Diseases.
2010

Achieved zero co-payment on high-cost medicines for CF patients, including inhaled antibiotics by a 2013 decision.

2012
  • The statutes of the Association are amended so that only patients and parents, and not health scientists, participate in the Board.
  • The Association's logo is improved and the website is modernised.
  • The Association organizes the 1st Panhellenic Meeting of CF Doctors, with the participation of representatives of the Association and for the first time of all specialized doctors who attend CF patients in Greece. The meetings, which are organised by the Association in the following years, discuss serious issues concerning patients, such as lung transplants, registration in the European CF Registry, etc. The Panhellenic Meetings of CF Doctors are the first organized efforts aimed at developing cooperation between patient representatives and the scientific community of CF.
  • Through the actions of the Association, the creation of an autonomous Adult CF Unit at Sismanoglio with separate wards and its staffing with specialized personnel is achieved. The wards are equipped through donations of the Association with televisions, small refrigerators and static exercise bicycles.
  • Achieved the publication of a gazette, specifying the disability rates of CF patients for the CCPs and zero co-payment for all patients' medications.
2013
  • The Association launches the public awareness campaign with the slogan "each breath a step closer to our dreams". For the first time, patients talk about Cystic Fibrosis in the TV show "Protagonists".
  • Ensuring that eligible patients have access to the first innovative CFTR-modifying therapy (ivacaftor), which acts on the causes of the disease.
2014
  • On the initiative of the Association, a transnational agreement is signed between Greece and Austria for the transplantation of lungs of Greek patients in Vienna. Thanks to the agreement, more than 20 patients are successfully transplanted within five years.
  • The respiratory rehabilitation programme with physiotherapy and exercise for CF patients is launched with the support of the Association, in collaboration with the Adult CF Unit of Sismanoglio, the CF Department of the Hippocratic Hospital of Thessaloniki, the 1st University Pulmonary Clinic of the "Sotiria" Hospital, the Centre for Respiratory Rehabilitation and the "Thorax" Foundation and the Faculty of Physical Education of the Aristotle University of Thessaloniki. At the same time, the Association organizes bi-conferences on physiotherapy and exercise in CF, where the results of the programme are presented.
2015
  • The recognition of the CF Units of Thessaloniki at the Hippokratio and Papanikolaou hospitals is achieved.
  • The integration of all CF Units in Greece into the European Cystic Fibrosis Patient Registry (ECFSPR) is completed.
  • The systematic free distribution of nebulisers by the Association to uninsured and economically weak patients for their daily treatments begins.
  • The Association is registered as a member and representative of Greece in the European Lung Foundation (ELF).
2016
  • The Association contributes to the operating costs of the adult CF department of the Papanikolaou Hospital of Thessaloniki: the salary of the secretary and the costs of the telephone and internet line used in the wards of the department.
  • Through the Association's interventions, the inclusion of an inhaled dry powder antibiotic in the Positive Drug List is achieved.
  • The Association participates as a founding  member in the establishment of the "Federation of Rare Diseases - Diseases (E.O.S.- SPA.NO.PA.)" in cooperation with other rare disease associations.
2017

The Association merges with the Association of Parents and Guardians of Children with Fibrous Cystic Fibrosis in Northern Greece, aiming at a unified, multifaceted and nationwide representation of CF patients throughout Greece.

2018

The Association achieves zero financial contribution of CF patients in paraclinical examinations, new generation nebulisers and respiratory physiotherapy sessions.

2019
  • Interventions are made by the Association for the institutionalization of the procedures of the new National Lung Transplantation Program that starts at the Onassis Heart Surgery Center. The first two successful transplants in CF patients take place three years later, in 2022.
  • The Association participates as a founding member of the Hellenic Patients' Association (HAE) in cooperation with other patient associations.
  • The Association participates in the first meeting of the European Transplant Patients Organization (ETPO) in the framework of the annual European Transplantation Conference of ESOT.
2020
  • Early access to the fourth innovative CFTR Modulator treatment that "freezes" the disease begins for critically ill Greek patients. The Association is awarded the Prix Galien Greece for the effectiveness of its interventions for the initiation of treatment in Greece.
  • The National Cystic Fibrosis Patient Registry is established and linked to the European Cystic Fibrosis Patient Registry (ECFPR).
  • Full retirement for CF patients after 15 years of work is voted in Parliament.
2021
  • The campaign of the "Breathless Breath" Association starts with the donation of 300 individual spirometers to CF patients throughout Greece.
  • The transplant and organ donation campaign "Breathe Unlimited Breath - Be a Life Donor" is launched and the first mural is created at the Nikaia Hospital with the 18-year-old transplanted patient with C.I.
  • The Association is awarded the Silver Healthcare Award for the campaign "Breathe Unlimited Breath - Be a Life Donor".
  • The Association participates as a founding member in the establishment of the Association of Rare Patients of Greece (ESAE), in collaboration with other rare disease associations.
2022
  • The Association is piloting the community psychosocial support programme with free psychological support groups for patients and carers from all over Greece.
  • The logo of the Association is changed and the reconstruction of a modern website is started.
2023
  • Agreement signed in Greece for the reimbursement of the innovative CFTR Modulators, theThis completes two years of continuous struggle by the Association for access to treatments that "freeze" the disease.
  • The second mural of the organ donation campaign "Breathe Unlimited Breath - Be a life donor" is created at Tzaneio Hospital with the only patient with C.I. in Greece who has undergone two lung transplants.
  • A musical concert is held to celebrate the 40th anniversary of the Association and to raise awareness for organ donation.
  • "Secret Mission: the K.I.", the first interactive children's book about K.I. in Greece, is published.
  • The Association is awarded the Bronze Healthcare Award for the Psychosocial Support program and the Teva Humanizing Health Award 2023 for the creation of the first national Cystic Fibrosis Helpline in Greece.