A document aimed at people living with sarcoidosis, or their care givers to explain the recommendations in the European Respiratory Society (ERS) clinical guideline for the treatment of sarcoidosis.

This document covers cases of sarcoidosis that affects the lungs, the skin, the heart and brain as well as fatigue (extreme tiredness) that is caused by sarcoidosis. It does not include treatments related to other issues, such as eye issues or pain associated with the condition. This is because there is not yet enough research into these areas to draw conclusions about the best treatments

Available in English, Danish, Dutch, French, German, Italian, Serbian, Spanish, and Swedish.

Access all languages: Treating sarcoidosis - understanding the professional guidelines

The Sarcoidosis Patient Charter outlines our joint strategy for the future improvement of patient care and quality of life for people with sarcoidosis.

We hope that the charter’s Call for Action will raise awareness and widen understanding about the impact that this condition has on many people.

We call on patients, caregivers, healthcare professionals, policy makers and the general public to support the charter and to help disseminate it as widely as possible:

• Sarcoidosis Patient Charter (EN) (PDF 436 KB)
• Sarcoïdose Patiënten Charter (NL) (PDF 423 KB)
• Patientencharta Sarkoidose (DE) (PDF 459 KB)
• Términos de referencia para el paciente de sarcoidosis (ES) (PDF 485 KB)

A collection of patient educational and informational resources provided by the Foundation for Sarcoidosis Research (FSR).

Includes videos on sarcoidosis treatment and therapies, wellness sessions and up-to-date information from healthcare professionals in the field.

A joint letter - Sarcoidosis: patient treatment priorities - highlights the findings of an international patient survey.

The survey asked people with sarcoidosis to rate the importance of different treatment outcomes: 1,842 people responded, with 'quality of life' and 'functionality' ranking as the two most highly-rated outcomes for treatment and care.

The letter also calls for:

• The assessment of ability to work and the provision of supportive measures.
• Clinicians to work in a multidisciplinary way to ensure a holistic approach.
• For sarcoidosis specialist centres to be established in every country.

The letter was written by the ELF sarcoidosis patient advisory group and healthcare professionals working in the field. A poster on the survey's preliminary findings was presented at ERS International Congress 2018. Download poster as a PDF.

A tool to help guide you through your sarcoidosis journey and understand which questions to ask your doctor

• Sarcoidosis patient compass (EN) (PDF 273 KB)
• Sarkoidose Patientenkompass (DE) (PDF 340 KB)
• Sarcoidosis Guía del Paciente (ES) (PDF 283 KB)
• Sarcoïdose Guide du patient (FR) (PDF 285 KB)
• Sarcoidosi Vademecum per il paziente (IT) (PDF 292 KB)
• Sarcoïdose Patiënten Kompas (NL) (PDF 302 KB)

In 2020, a sarcoidosis patient journey was developed by the group as part of the activities of ERN-LUNG.

This journey represents the views of the patient community and was based on a report that sarcoidosis patient organisations identified as the most important priorities/issues for individuals with sarcoidosis in the areas of diagnosis, treatment, follow-up care, education and communication.

We hope it will be used to inform clinicians about the needs of people with sarcoidosis at different stages of their journey.

• Sarcoidosis patient journey (EN) (312 KB)
• Sarcoïdose Patiëntenpad (NL) (28 KB)

Common words relating to sarcoidosis with an explanation:

• A - C

  • ACE (Angiotensin Converting Enzyme) - levels of this enzyme may be increased in the blood of patients with sarcoidosis.
  • Asymptomatic - there are no symptoms.
  • Biopsy - involves collecting a small part of tissue for analysis.
  • Cardiologists - doctors who diagnose, assess and treat patients with diseases of the heart and blood vessels.
  • Chronic disease - long-term disease.
  • Corticosteroids - drugs that reduce swelling (anti-inflammatory). Also called steroids.
  • Cortisone - a human hormone that suppresses the immune system and is used primarily to treat sarcoidosis.
  • CT scan - a type of scan that uses x-rays and a computer to create a detailed picture of the inside of the body.

• D - F

  • Dermatologist - doctors who diagnose, investigate, treat and manage the conditions of people with skin disease.
  • Electrocardiogram (EKG or ECG) - a test of the electrical activity of the heart.
  • Erythema nodosum - tender, red bumps or patches on the skin, usually found on the face, arms or shins.

• G - J

  • Granulomas - patches of red, swollen tissue that form in various parts of the body.
  • Hilar adenopathy - enlargement of the lymph glands at the root of the lung. Sometimes also called lymphadenopathy.
  • Hypertension - high blood pressure.
  • Immunosuppressant - drugs that suppress the body's immune system.
  • Interstitial lung disease (ILDs) - result from damage to the cells surrounding the alveoli (air sacs) leading to widespread inflammation and fibrotic scarring of the lungs.

• K - M

  • Lupus pernio - a skin condition where purple coloured bumps form on the face e.g. cheeks, nose, lips and ears.
  • Multi-disciplinary team - healthcare professionals with different expertise work together to support people with complex care needs.
  • Multi-systemic - a disease that can affect more than one part of the body.

• N - Q

  • Neurologist - a doctor who diagnoses, treats and manages disorders that affect the central nervous system (the brain and spinal cord).
  • Pulmonary rehabilitation - a programme of exercise and education designed to help people with lung conditions to manage their symptoms.
  • Pulmonologist - a doctor who diagnoses and treats conditions affecting the respiratory (breathing) system.

• V - Z

  • Uveitis - caused by inflammation of the middle layer of the eye (uvea)