Vaccination advice

A vaccination campaign against COVID-19 infection has been scheduled at the European level to be run simultaneously in all European countries.

There is no evidence to support that people with rare diseases should avoid vaccination against SARS-CoV-2. Vaccination is essential to protect the whole population, including patients with rare skin diseases. Ultimately, however, this vaccination is a matter of personal choice.

We encourage vaccination, especially for patients with disorders that likely affect the immune system and can be associated with COVID-19 complications. As the currently available messenger RNA (mRNA) vaccines are not live vaccines, they should pose no risk to patients with immunodeficiency conditions, nor those undergoing immunosuppressive treatment. These vaccines cannot infect you with COVID19 disease. It is not anticipated that they pose a risk to patients with immunodeficiency conditions, or to those undergoing immunosuppressive therapy. Schematically, the core principle behind these mRNA vaccines is that they target only the spike protein of SARS-COV-2, which is located on the virus surface (spicule). This spike protein enables the virus to get into the cells and infect them.

The vaccines do not alter the patients’ genetic information, given that the genetic information of the virus is not integrated into the genome of the infected cells.

However, unless new data on these safety issues are made available, the current vaccines should be discussed with caution for patients with a history of serious anaphylactic reaction, it means severe urticaria with angioedema associated with general signs, or even shock, in addition to the need to carry an adrenaline pen.

Here, it must be noted that hereditary angioedema is caused by bradykinin accumulation in tissues, which is not an allergic mechanism. Therefore, there is no contraindication to vaccination for patients suffering from this condition.

Depending on the future availability of other vaccine types, new recommendations will be issued, as necessary.

It must be kept in mind that vaccinated persons must continue to follow the recommended preventive measures against COVID-19, such as wearing a mask, washing regularly hands with soap, practicing social distancing, and others. So far, more information is required to determine whether vaccinated persons can still infect other people that are not immunized against the SARS-CoV2 virus disease.

The experts from the different ERN-Skin disease groups have summarized in the following their recommendations, taking account of specific cases and treatments for patients with rare skin diseases.

For further information, please have a look at the different disease groups, as detailed here below.

If you have any question, do not hesitate to contact the Health Care Provider (HCP) of your country.

Please read the general information carefully.

There is no evidence that contradicts vaccination against SARS-CoV-2 for patients with hereditary epidermolysis bullosa (EB).

The vaccination is essential for the whole population, including patients with EB. It is, however, up to the patient whether he/she wants to get vaccinated, as it is the free choice for any other individual.

However, vaccination is strongly recommended for patients with the most severe forms of EB, particularly those with severe mucous/cutaneous fragility and systemic involvement, such as malnutrition and cardiomyopathy among others.

For detailed advice, do not hesitate to contact the specialist who ensures your medical follow-up by email, fax, or telephone.

German version:

Bei der seltenen Hauterkrankung Epidermolysis bullosa besteht keine Kontraindikation gegen die COVID-19 Impfung. Diese Impfung ist wichtig für die gesamte Bevölkerung, einschließlich Epidermolysis bullosa Patienten. Es bleibt natürlich jedem Patienten selbst überlassen, ob er einer Impfung zustimmt. Jedoch empfehlen wir das Durchführen der Impfung ausdrücklich bei Epidermolysis bullosa-Patienten mit schweren Formen, insbesondere bei schwerer (Schleim-)Hautfragilität und systemischer Beteiligung (z.B. Unterernährung, Kardiomyopathie etc.). Falls Fragen bestehen, zögern Sie bitte nicht Ihren betreuenden Arzt zu kontaktieren.

Please read the general information carefully.

There is no contraindication to vaccination against SARS-CoV-2 for patients with ichthyoses and palmoplantar keratoderma.

The vaccination against SARS-CoV-2 is essential for the whole population, including patients with ichthyosis or palmoplantar keratoderma. It is, however, up to the patient whether he/she wants to get vaccinated, as it is the free choice for any other individual.

However, vaccination is strongly recommended for patients with the most severe forms of ichthyosis or palmoplantar keratoderma, particularly those in poor general condition, such as undernutrition, with marked mucous and cutaneous fragility, or with pulmonary involvement.

For patients with a personal history of significant severe allergy, including those with Netherton syndrome, vaccination should best be carried out in a hospital environment. However, in the context of a previous severe anaphylactic allergy, SARS-COV-2 vaccination should be discussed with caution The possibility of vaccination depends on the specificity of the allergy of each patient (please read the general information).

For detailed advice, do not hesitate to contact the specialist who ensures your medical follow-up by means of email, fax, or telephone.

Please read the general information carefully.

There is no evidence to support that patients with ectodermal dysplasia should avoid vaccination against SARS-CoV-2. It is, however, up to the patient whether he/she wants to get vaccinated, as it is the free choice for any other individual.

Even though your risk for developing severe disease is unlikely to be increased, we encourage vaccination, to protect the vulnerable as well as yourselves. We recommend the vaccination principally for patients with incontinentia pigmenti (IP). The latter condition may affect the immune system, with complications of COVID-19 more likely to occur.

For detailed advice, do not hesitate to contact the specialist who ensures your medical follow-up by means of email, fax, or telephone.

Please read the general information carefully.

There is no contraindication to vaccination against SARS-CoV-2 for patients with monogenic connective tissue disorders.

Vaccination against COVID19 is essential for the whole population, including patients with connective tissue disorders. Nevertheless, it is up to the patient whether he/she wants to get vaccinated, as it is the free choice for any other individual.

However, vaccination is strongly recommended for patients with connective tissue disorders, particularly those in poor general condition or with severe vascular or important lung involvement.

For detailed advice, do not hesitate to contact the specialist who ensures your medical follow-up by means of email, fax, or telephone.

Please read the general information carefully.

There is no contraindication against SARS-CoV-2 for patients with cutaneous mosaic disorders.

The vaccination is essential for the whole population, including patients with your mosaic disease. It is, however, up to the patient whether he/she wants to get vaccinated, as it is the free choice for any other individual.

However, vaccination is strongly recommended for patients with the most severe forms of cutaneous mosaic disease, including those in poor general condition or with organ involvement like lung or heart disease.

Special case of certain patients receiving immunosuppressive drugs. Considering the immunosuppressants’ effect on vaccination efficacy, the immunosuppression should be as low as possible at the time of vaccination. However, in an effort to potentially enhance the vaccination efficacy, the actual immunosuppressive therapy should not be stopped if it is deemed essential for a severely affected patient under such treatment.

If you are receiving immunosuppressive drugs, taking account of the immunosuppression’s effect on vaccination efficacy, we invite you to contact your reference center to identify the best treatment options for you.

For detailed advice, do not hesitate to contact the specialist who ensures your medical follow-up by means of email, fax, or telephone.

Please read the general information carefully.

There is no contraindication to vaccination against SARS-CoV-2 for your rare skin disease.

The vaccination is essential for the whole population, including patients with xeroderma pigmentosum (XP). It is, however, up to the patient whether he/she wants to get vaccinated, as it is the free choice for any individual.

However, vaccination is strongly recommended for patients with severe XP forms and with any forms of trichothiodystrophy or Cockayne syndrome.

For detailed advice, do not hesitate to contact the specialist who ensures your medical follow-up by means of email, fax, or telephone.

Please read the general information carefully.

Since patients with autoimmune bullous skin diseases (AIBD) display a higher risk of severe viral infection types including COVID-19, particularly older patients and those treated with oral corticosteroids or conventional immunosuppressants like methotrexate, mycophenolate mofetil, and azathioprine, the AIBD group of the ERN SKIN recommends that AIBD patients be vaccinated against SARS-CoV-2.

As the currently available mRNA vaccines are not live-vaccines, they should pose no risk to patients with AIBD, nor to those undergoing immunosuppressive treatment.

Considering the immunosuppressants’ effect on the vaccination efficacy, immunosuppression should be as low as possible at the time of vaccination. Nevertheless, in an effort to potentially enhance vaccination efficacy, the actual immunosuppressive therapy should not be stopped. Especially concerning rituximab, vaccination should be performed prior to therapy initiation, whenever possible. If it is not possible, vaccination should be conducted 4 to 6 months following rituximab infusion.

For detailed advice, do not hesitate to contact the specialist who ensures your medical follow-up by means of email, fax, or telephone.

Please read the general information carefully.

Concerning patients who still have or have had a serious drug eruption as a skin reaction to a drug, including Stevens-Johnson syndrome, Lyell’s syndrome, acute generalized exanthemous pustulosis, drug reaction with eosinophilia and systemic symptoms (DRESS), or another type of severe drug eruption, as well as those with erythema multiforme, vaccination against SARS-CoV-2 presents no particular contraindication.

Indeed, these diseases exhibit very different underlying mechanisms, as compared to the mechanisms involved in anaphylactic reactions, as previously mentioned in general information above. Also, there is no contraindication to vaccination against SARS-CoV-2 for patients with Stevens-Johnson syndrome or Lyell syndrome that are not clearly related a drug.

Moreover, vaccination should be strongly recommended for patients suffering from these diseases, especially those in a deteriorated general condition, with significant mucous and skin fragility, or with lung damage. This applies both to the acute phase of their disease or sequelae stage.

Depending on the future availability of other vaccine types and new data from the ongoing vaccination campaign, new recommendations will be issued, as necessary.

For detailed advice, do not hesitate to contact the specialist who ensures your medical follow-up by means of email, fax, or telephone.

Please read the general information carefully.

Vaccination against SARS-CoV-2 is essential for the whole population, including patients with hidradenitis suppurativa/acne inversa. It is, however, up to the patient if he/she wants to get vaccinated, as it is the personal choice for any other individual.

There is insufficient evidence to understand how COVID-19 likely impacts hidradenitis suppurativa/acne inversa patients undergoing systemic treatment. Patients treated using tumor necrosis factor-alpha blockers, including adalimumab, infliximab, and etanercept, may be exposed to a slightly increased risk of developing upper respiratory tract infections, especially with infliximab.

As the currently available mRNA vaccines are not live vaccines, they should pose no risk to patients with hidradenitis suppurativa/acne inversa, nor to those undergoing immunosuppressive treatment.

Considering the immunosuppressants’ effects on vaccination efficacy, immunosuppression should be as low as possible at the time of vaccination. However, in an effort to potentially enhance the vaccination efficacy, the actual immunosuppressive therapy should not be stopped if it is deemed essential for a severely affected patient.

It is up to the patient if he/she wants to get vaccinated, as it is the free choice for any other individual.

For detailed advice, do not hesitate to contact the specialist who ensures your medical follow-up by means of email, fax, or telephone.