The census conducted by WE COMBINEItalian Federation of Rare Diseases to photograph the progress of the vaccination campaign in Italy, he again highlighted difficulties for vaccinations of people with rare diseases and their families. 57.2% of those who responded to the survey said they had received the vaccine (of which 26.9% have already completed the vaccination course), 9.1% of respondents have a valid reservation while 30 , 3% still can’t book. Furthermore, 3.4% say they do not want to be vaccinated. Those who received at least the first dose fell into the “frail” category (51.6%), as caregivers (26.1%) or for other reasons (other categories 15.3% and age 7%). The survey was conducted from 3 to 19 May 2021 by UNIAMO and the survey targeted people with rare diseases, family members and caregivers.

The vaccination campaign started in January 2021, with an indication of priority for people with high frailty (extremely vulnerable people; severe disability): the so-called category of the very frail. This indication immediately led to the exclusion of many rare diseases, most with overlapping symptoms and with care needs similar to those recognized by the Ministry of Health (table 3. Interim recommendations on the target groups of the anti SARS-CoV-2 vaccination /COVID-19).

Since the start of the vaccination campaign, the UNIAMO Federation has been recognized as the “only institutional referent” in the field of rare diseases and as such has made contributions to the permanent Operating Table set up by the Extraordinary Commissioner for the Covid-19 emergency.

“There are almost 8,000 rare diseases and not all of them expose you to a greater risk of contagion but it is clear that priority must be guaranteed to the sick before the healthy. This criterion was shared by Gen. Figliuolo, in whom we have always placed great trust, who reiterated this position also in the invitation to the Regions of 24 May, with the indication of priority for people with comorbidities. We hope that all the delays in vaccinations of the community of people with rare disease and their families will be recovered, and that for the next, possible vaccination campaign, uniformity between the regions will be guaranteed “, he declares Annalisa Scopinaro, President of UNIAMO – Italian Federation of Rare Diseases.

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