Patient Support Groups

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.

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. 

http://www.autoinflammatory.org/

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... 

 www.raredisorders.ca

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.

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.

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.

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.

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.

http://www.orpha.net/

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. 

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…

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.

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.