DSAI, AMRI and FMF&AID
The DSAI has been campaigning for people with a congenital immune deficiency for 30 years now. It helps patients and relatives deal with the disease, maintains an extensive medical and political network and advocates for early diagnosis and appropriate treatment.
The main goals:
– Comprehensive help, advice and support for people with congenital immune defects.
– Educating the public about the topic of “congenital immunodeficiencies”.
– Raising awareness and training of doctors for the earliest possible diagnosis and appropriate treatment of all those affected.
– Ensuring comprehensive medical care for patients with congenital immunodeficiency.
– Acquiring reliable plasma donors and expanding the plasma center network
– Reducing costs in healthcare by avoiding expensive incorrect therapies
– Continuous collaboration with research, medicine, healthcare and politics, (Milestone 2019: Introduction of newborn screening to detect severe congenital immune defects)
– Establishment of a global research network, particularly in the field of genetic engineering…
Website: https://www.dsai.de
LinkedIn: https://www.linkedin.com/company/immundefekte-patientenorganisation/about/
AMRI Onlus is a voluntary association that works in favor of children suffering from childhood rheumatic diseases. AMRI was born in 1992 at the San Matteo Polyclinic in Pavia by a promoting group made up of parents and doctors. Since June 2002, volunteers have been working at the G. Gaslini Institute in Genoa. The volunteers, with the help of some collaborators, support families and children with economic aid, social and health assistance, and the promotion of scientific research. And again, they manage five apartments in the immediate vicinity of the hospital, rented by the association to host those parents who, having to stay in the hospital for a long period, avoid the search for accommodation that is not always adequate and generally very expensive. The volunteers also organize meetings, fundraisers, conferences, raising awareness among public opinion, institutional bodies and health facilities on the serious problems that rheumatic diseases represent for children and to obtain everything that is necessary to lead a normal social life. AMRI volunteers then make a psychologist and psychotherapist available to the department who supports, in particular, parents in dealing with the emotional impact that the illness has on both the child and the family.
Website: http://www.amri.it
Email: assamri@gmail.com
Facebook: https://www.facebook.com/amriaps
The global FMF (familial Mediterranean fever) and AID (autoinflammatory disease) association is a non profit patient-led umbrella organization supporting more than 22 affiliates and partners serving autoinflammatory patients worldwide.
FMF & AID is headquartered in Switzerland and is uniquely positioned to serve its many affiliates and partners located globally. Equipped with multilingual capabilities, the association currently supports over 100,000 patients in 54 countries, in 18 different languages and is continually expanding. The goal is to provide guidance, advocacy, information, support and education to patient and physician communities, while raising awareness of what it means to live with an autoinflammatory disease.
Patient experts are also involved in various initiatives to support diagnosis, treatment and awareness of disease symptoms. FMF & AID collaborates and provides: insights and exchanges with doctors expert in autoinflammatory diseases from renowned academic medical institutions; patient-centered leadership and communication through ImmunAID activities; promoting harmonization of autoinflammatory diagnostic guidelines; guarantee of equal access to specific care and treatments through involvement in the RITA network; educational and training opportunities for medical professionals to advance their knowledge of these rare disorders of the innate immune system.
Website: https://www.fmfandaid.org
Email: info@fmfandaid.org
Facebook: https://www.facebook.com/FMFandAID
LinkedIn: https://www.linkedin.com/company/fmf-and-aid