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)