40 years HCFA HCFA-TEAM February 15, 2023

40 years HCFA

 

 

40 years fighting
for our patients
and their families rights

The first mention of the disease appears in 1705 in a folklore book, stating that “a child with a salty taste is bewitched.” 

Until 1980, Cystic Fibrosis had a very low life expectancy. 75% of CF patients died in childhood. At that time, the disease was unknown and there were few treatments. In May 1983, 24 parents of children with Cystic Cystic Fibrosis Association with the help of DR George Adam, pediatrician of the CF Unit in “Agia Sofia” Children’s Hospital.

The parents of the young patients needed an association to advocate for their childrens rights, to improve their access to medicines and care, to improve their quality of life, and to raise public awreness of the disease. 

Two decades after the foundation of the Association, the number of CF patients who managed to survive and reach adulthood was increased. The first adult patients were elected to the Board of Directors of the Association in 2023. Since then and until today, 40 years later, patients and parents have been working together for a better future for CF patients. 

Within 40 years of actions, the Hellenic Cystic Fibrosis Association has managed to change the disease in Greece and become known as one of the most famous patient associations in Greece and abroad for its successful actions and work!

Milestones
1938

Dorothy Andersen first describes the mysterious disease that kills children as "Cystic Fibrosis of the Pancreas."

1983

24 parents of children with Cystic Fibrosis founded the Hellenic Association of Cystic Fibrosis under the name "Hellenic Society for Fibrous Cystic Disease"

1984

  • The Association's Board of Directors members begin to participate in European Cystic Fibrosis conferences.

  • The Association organizes a scientific conference with specialized scientists for the first time, who describe the latest developments of the disease. Since then, the scientific conference has become an institution organized yearly.

1986

  • The start of prenatal testing in Greece begins. The first healthy child is born after prenatal testing.

     

  • The Association covers the costs of research staff for the continuation of prenatal testing.

1987

The Association assists in the creation of an informative brochure on the disease.

1989

  • The CF Unit of the "Agia Sofia" Children's Hospital is recognized and joins the National Health System as an independent department.

    The “North Greece CF Association” (Association of Parents and Guardians of Northern Greece of Children Suffering from Fibrous Cystic Disease) is founded and, according to its Statute, cooperates with the Hellenic Cystic Association.

1990

  • The Association achieves the reduced participation of 10% of all patients in medication.

  • It is proposed to include the disease in incurable and chronic diseases.

  • Efforts are being made to provide privileges and benefits for disabled patients to CF sufferers.

1993

  • The operation of the Adult CF Department begins at the 5th Pulmonary Clinic of Sismanoglio in collaboration with the Children's CF Department of the "Agia Sofia" hospital.

  • The Association covers the costs of the monthly continuing training of the attending pulmonologist of “Sismanoglio” Hospital in Brompton, England

  • The Central Health Council recognized the Sismanoglio CF Unit in 2004

1994

The Association finances a research program at the Department of Molecular Biology of the University Clinic of the University of Athens.

1995

CF patients were identified as "Disabled."

1997

The administration of the first inhaled medicine for Cystic Fibrosis begins in Greece.

1999

Patients with CF are admitted to Greek Universities with no entrance exams.

2001

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

2003

  • The Association registers as a member and representative of Greece in the European CF Association CF Europe.

  • The Association launches its first website.

2005

The Association enters as a member to the Hellenic Association of Rare Diseases (PESPA).

2007

  • The operation of the adult CF Department at the "Papanikolau" hospital in Thessaloniki begins.

  • The Association participates in the National Action Plan for Rare Diseases drafting committee.

2010

Achievement of zero co-payment of high-cost drugs for CF patients, including inhaled antibiotics.

2012
  • The amendment of the Association's statutes allows only patients and parents, not health professionals, to participate in the Board.
  • The Association launches an improved version of its logo and modernizes its website Τροποποιείται το καταστατικό του Συλλόγου, ώστε να συμμετέχουν στο ΔΣ μόνο ασθενείς και γονείς, και όχι επαγγελματίες υγείας.
  • The Association organizes the 1st Panhellenic Meeting of CF Doctors, with representatives of the Association and, for the first time, all the specialized doctors who monitor CF patients in Greece. At the meetings organized by the Association and in the following years, serious issues concerning patients are discussed, such as lung transplants, registration in the European CF Registry, etc. The Panhellenic Meetings of CF Doctors are the first organized efforts to develop collaboration between patient representatives and the CF scientific community.
  • The Association leads the efforts for creating and staffing the autonomous CF Unit for adults in Sismanoglio Hospital with separate hospital wards. In the following years, the rooms are equipped through donations from the Association with televisions, small refrigerators, and stationary exercise bikes.
  • The Greek state legislates for determining the degree of disability for CF patients and zero participation in all patient medications.
2013
  • The Association launches the public awareness campaign "Each Breath a Step Closer to our Dreams." Patients talk about Cystic Fibrosis on TV for the first time in the show "Protagonists."
  • Eligible patients are guaranteed access to the first innovative treatment (ivacaftor) of CFTR modifiers, which acts on the causes of the disease.
2014
  • The Association leads the efforts for the agreement between Greece and Austria for lung transplantation of Greek patients in Vienna. Thanks to the agreement, more than 20 patients are transplanted successfully within five years.
  • The respiratory rehabilitation program for specialized respiratory physiotherapy and individualized exercise for CF patients begins in collaboration with the Adult Cystic Fibrosis Unit of the "Sismanoglio" Hospital, the CF Department of "Hippokrateio" Hospital, the Respiratory Rehabilitation Unit, "Sotiria" Hospital, the Center for Respiratory Rehabilitation and the "Thorax" Foundation and the Faculty of Physical Education and Sport Science, AUTH. The program results were presented at conferences in 2015 and 2016 in Athens and Thessaloniki under the title "Physiotherapy & Exercise in Cystic Fibrosis."
2015
  • The CF Units of Thessaloniki in the Hippokrateio and Papanikolaou hospitals are recognized.
  • The inclusion of all CF Units in Greece in the European Cystic Fibrosis Patient Registry (ECFSPR) is completed.
  • The systematic free distribution of nebulizers by the Association to uninsured and economically weak patients for inhalation as part of 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 at the Papanikolaou hospital in Thessaloniki: salary costs for the secretary and covering the costs of the telephone line and internet in the Department's wards.
  • Inclusion of an inhalable antibiotic in dry powder in the Positive List of Medicines.
  • The Association participates as a founding member in establishing the "Federation of Rare Diseases-Diseases (EOS-SPA.NO.PA)" in collaboration with other Rare Disease Associations.
2017

The Association merges with the “North Greece CF Association” (Association of Parents and Guardians of Northern Greece of Children Suffering from Fibrous Cystic Disease), aiming for a unified and pan-Hellenic representation of CF patients throughout Greece.

2018

The Association achieves zero participation of CF patients in paraclinical examinations, new-generation nebulizers, and respiratory physiotherapy sessions.

2019
  • The Association assists in institutionalizing the new National Lung Transplantation Program procedures at the Onassis Cardiac Surgery Center, with the first two successful transplants in CF patients taking place three years later, in 2022.
  • The Association participates as a founding member of the Greek Patients’ Association in collaboration with other patient associations.
  • The Association participates in the first meeting of the European Transplant Patients Organization (ETPO) within the framework of the annual European transplant conference of ESOT.
2020
  • The early access program to the fourth innovative CFTR Modulator treatment that "freezes" the disease begins for Greek patients in critical condition. The Association is awarded the Prix Galien Greece for its interventions' effectiveness in initiating treatment in Greece.
  • The National Cystic Fibrosis Patient Registry, linked to the European CF Registry (ECFPR), is established.
  • The full retirement of CF patients after 15 years of work is instituted.
2021
  • The Association's "Breath Unlimited " campaign begins with the donation of 300 individual spirometers to CF patients throughout Greece.
  • The " Breath Unlimited - Be a Life Donor" campaign is carried out to promote transplants and organ donation - A mural is created on the exterior of the Nice General Hospital depicting an 18-year-old transplant patient,
  • The Association is awarded the Silver Healthcare Award for the "Breath Unlimitted - Be a Life Donor" campaign in favor of organ donation.
  • The Association participates as a founding member in establishing the Association of Rare Diseases Greece/RDG (ESAE) in cooperation with other Rare Disease Associations.
2022
  • The Association offers a pilot program to strengthen the mental health of CF patients and caregivers from all over Greece by providing psychological support to groups without financial participation.
  • The Association's logo changes, and the reconstruction of its new website begins.
2023

An agreement is reached in Greece between the Ministry of Health and the pharmaceutical company for the reimbursement of the innovative CFTR Modulators treatments for eligible Greek patients with CF, completing two years of continuous efforts by the Association to ensure access to the innovative therapies that "freeze" the disease.