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Welcome to the Periodic Fevers website.

Periodicfevers.com is here to support people affected by a rare autoinflammatory disease (such as CAPS, SJIA, FMF, TRAPS, HIDS/MKD or gout*), – it’s here to help you! There is a wealth of information for you from:

  • ‘The Science’: an area dedicated to explaining the immune system and autoinflammatory diseases; what they are, how common they are, the symptoms, what happens over the course of the illness, and the causes
  • ‘Lifestyle’: an area where you can browse articles that will support you every step of the way when living with, or caring for someone with, an autoinflammatory condition; in family life, work life, personal life, and navigating a child’s education
  • ‘Kids Corner’: an area dedicated to young people, where you can read stories from two children who live with an autoinflammatory condition and describe how they cope and still have fun!

Take a look around. We hope you find what you are looking for!

*Gout is not a rare disease

FAQs

In celebration of Rare Disease Day, we’ve invited autoinflammatory syndromes experts to share their experience and knowledge with you.

We’ll publish the experts’ answers to your most frequently asked questions.

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Orphanet

Orphanet is the reference portal for information on rare diseases and orphan drugs, for all audiences. Orphanet’s aim is to help improve the diagnosis, care and treatment of patients with rare diseases.

Orphanet also provides access to a directory of expert services for specific diseases or groups of diseases, including expert centres.

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NORD

NORD is an independent 501(c)(3) non-profit patient advocacy organisation dedicated to individuals with rare diseases and the organisations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

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Ligue Genevoise contre le Rhumatisme

Ligue Genevoise contre le Rhumatisme (LGR) is a centre of competence for osteo-articular diseases. It is a non-profit organisation, comprised of a multidisciplinary team of public health nurses who specialise in adult and paediatric rheumatology, and physiotherapists. The centre aims to improve the lives of patients by providing assistance and information with a strong focus on prevention.

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Rheumaliga beider Basel

The Rheumaliga beider Basel is a non-profit patient advocacy organisation that represents the interests of people affected by rheumatologic diseases. The organisation works closely with specialists to fulfill unmet patient needs, and raise public awareness.

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AIFP

The Italian Association for Periodic Fevers (AIFP, Associazione Italiana Febbri Periodiche), was founded in 2006. AIFP is an APS (Associazione di Promozione Sociale) promoting outreach events, and is associated with UNIAMO FIMR the non-profit Italian Federation for Rare Diseases (Federazione Italiana Malattie Rare). AIFP main aims is to sensitise doctors to this group of diseases (Periodic Fevers) through events, and to support patients and their families by providing information (publications, website), and support groups details.

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AMRI

The Association for Paediatric Rheumatoid Diseases (AMRI, Associazione per le Malattie Reumatiche Infantili) is a non-profit organisation who supports children affected by paediatric rheumatoid diseases. Founded in 1992 in S. Matteo Hospital (Pavia, Italy) by a group of parents and doctors, it now operates from Giannina Gaslini Institute (Genoa, Italy), where Prof Martini directs the Paediatric Department. With the help of volunteers, the main goals for AMRI are to provide economic, social, and healthcare support to the children and their families, as well as fund scientific research. 

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Autoinflammatory Alliance

The Autoinflammatory Alliance is a 501 (c)(3) non-profit public charity dedicated to promoting awareness, proper diagnosis and treatment, and improved care for people with autoinflammatory diseases.  There are many autoinflammatory diseases with symptoms that are present from childhood or infancy. A few develop symptoms in adulthood, or late childhood... 

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RareConnect Online Rare Disease Communities

RareConnect is a safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages. RareConnect partners with the world's leading rare disease patient groups to offer global online communities allowing people to connect around issues which affect them while living with a rare disease.

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EURORDIS

EURORDIS is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases, dedicated to improving the quality of life of all people living with rare diseases in Europe. 

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PRINTO

PRINTO is a not for profit, non governmental, international research network with the goal to foster, facilitate and co-ordinate the development, conduct, analysis, and reporting of trials and studies in children with paediatric rheumatic diseases (PRD). PRINTO supports the EUROFEVER project…

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EUROFEVER

This project aims to sensitize pediatricians and pediatric rheumatologists to the prompt recognition of Autoinflammatory Diseases; provide proper information to families affected by these conditions and increase the knowledge on the clinical presentation, response to treatment and complications of theses rare disorders.

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Expert insights: Professor Ozen, Turkey

We have asked Professor Ozen from Turkey for her expert opinion and advice on what it’s really like to live with Periodic fever syndromes.

CLICK HERE TO WATCH
The Science
Daily impact of periodic fevers

Lots of people do not realise the impact that rare conditions (such as SJIA) and periodic fever syndromes can have on the lives on affected children. 

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Kids Corner
Join our communities!

Our brand new “Periodic Fevers” Facebook and Twitter communities are here for patients, carers and families to connect and access regularly updated news on ‪‎autoinflammatory diseases. Take a look around.

VISIT OUR FACEBOOK PAGE
A minute change in DNA can have big impact

Here’s our current understanding of the science behind the tiny DNA change(s) that lead to rare periodic fevers.

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The Science
Tim’s Story

A story about a young boy with an autoinflammatory illness

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Kids Corner
Learn more about SJIA (Systemic juvenile idiopathic arthritis)

SJIA is a rheumatic disease that affects children aged 5 years or younger. SJIA is the rarest form of Juvenile Idiopathic Arthritis (JIA). 

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The Science
If you have a child with an autoinflammatory disease…

…you will know there are added pressures and considerations for your family life. Thankfully, you’re not alone.

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Lifestyle
Paula's story

A story about a teenage girl with an autoinflammatory disease managing school, friends and daily life.

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Kids Corner
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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The Science
CORD

CORD is Canada's national network for organizations representing all those with rare disorders.

CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada.

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December 2015 - GLDEIM/ACZ885/0044