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Tips for the Rare during COVID-19

There is a lot to think about when living with a periodic fever syndrome or a rare autoinflammatory disease – and that’s at the best of times. During COVID-19, caring for yourself or a loved one can be even more difficult. We sat down with healthcare experts and asked them to share their advice on how to deal with the new normal – from appointments and medication to separation anxiety and resilience. Watch the videos below to learn more.

Hospital visits with my child – are they safe?

Norma O’Keeffe, an advanced nurse practitioner in a children’s hospital, addresses hospital visits and other concerns raised by parents of children with autoinflammatory diseases. Find out what steps hospitals are taking to ensure safety and how to best prepare for a visit.

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Mental resilience during COVID-19

For children with rare autoinflammatory diseases, this time can be particularly challenging and take a toll on their mental health. Linda Bergamini, a psychologist, explains why this new normal can reawaken old fears and shares tips on how to face them together.

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Contacting your doctor remotely

Alexandr Runov, head of the psychological service at the Sunflower charity foundation supporting patients with immune system disorders, speaks about the benefits of online or phone appointments with their doctors.

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Working with your physician

During these extraordinary times, many look to their doctor for answers. Milos Jesenak, physician and clinical immunologist, talks about the importance of placing trust in your physician and effectively managing your autoinflammatory disease.

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Emerge bravely into the new normal

Staying isolated for months can make returning to normal seem daunting. Psychologist Linda Bergamini reminds us of the joy of being together, the excitement of discovering new things, and urges us not to abandon our curiosity.

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Learn more about HIDS (hyperimmunoglobuiln D Syndrome)

HIDS is a rare auto inflammatory disease, and one of the periodic fever syndromes that presents in early childhood.

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Periodic Fevers

February 2016 GLDEIM/ACZ885/0057