What is it?
UILDM stands for Unione Italiana Lotta alla Distrofia Muscolare—the Italian Union Against Muscular Dystrophy. Since its founding in 1961, it has operated for more than fifty years as Italy's principal organization for people with muscular dystrophies and other neuromuscular diseases. UILDM provides care and support, advances health information and scientific research, and works to foster the social integration of people with disabilities.
The Beginning
UILDM's inaugural conference took place in Trieste on December 12, 1961, chaired by Professor Donini, director of the Psychiatric Hospital.
From the start, one person embodied UILDM's mission above all others: Federico Milcovich. Afflicted with severe muscular dystrophy from age thirty, Milcovich found that Italy knew little about the disease. He reached out to professors Aloisi, Belloni, Donini, and De Bernard, hoping to coordinate scientific research. UILDM was born from that effort. The organization established its Medical-Scientific Commission and began organizing fundraising events.
Milcovich, who died in Padova in 1988, never surrendered to illness. More importantly, he believed that a person with a disability possesses the same dignity as anyone else—a dignity that must be recognized in all its difference and need, along with the right to participate fully in social life.
Across the Country
Today, UILDM operates throughout Italy with 77 provincial sections and 9 regional committees. They carry out broad social work and medical-rehabilitative assistance, managing ambulatory rehabilitation centers, prevention programs, and research initiatives in close partnership with universities and local health services. The organization has also launched genetic counseling services open to all families.
To provide people with neuromuscular diseases comprehensive, quality care through a multidisciplinary approach, UILDM opened the NEMO Center (NEuro Muscular Omnicentre) in 2007 at the Niguarda Ca' Granda Hospital in Milan. The center offers complete, specialized treatment for the diseases at the heart of UILDM's mission.
Commitment to Society
UILDM works constantly on scientific research, prevention, health education, and genetic counseling. It fights tirelessly against architectural barriers in all forms—and against the cultural and psychological barriers rooted in prejudice and discrimination. The organization holds accreditation as a First-Class Entity for the National Civil Service. For fifty years, it has published DM magazine, a nationally distributed quarterly that reports on the association's initiatives and developments in neuromuscular research and care. Beginning in 1990, Telethon gave scientific research a major boost. The telethon originally focused only on muscular dystrophies—a choice that reflected UILDM's pioneering role in bringing the fundraising model to Italy. Later, Telethon expanded to fund research on other genetic diseases as well.
Over the years, UILDM has partnered with many organizations to launch collaborative initiatives. Just months ago, the Green Line Stella project—a partnership among UILDM, the ASAMSI Association, and SMA Families—activated a free phone line (800 589738). It offers people with neuromuscular diseases and their families another resource: a welcoming service that helps them navigate the available local support systems. Since 2009, UILDM has worked with other muscular dystrophy associations and the Telethon Foundation to create a Registry of Patients with Neuromuscular Diseases. The registry helps researchers organize and update information on how research is progressing. Also in 2009, UILDM launched "A Possible City," a three-year project timed with the fifth National UILDM Day. The project aims to amplify a fundamental message: every city must be able to meet the needs of all its people, including those with disabilities, ensuring that everyone can find their own place and live with dignity.
UILDM Partners
ACMT Rete Associazione Charcot-Marie-Tooth
AISLA Associazione Italiana Sclerosi Laterale Amiotrofica
ASAMSI Associazione per lo Studio delle Atrofie Muscolari Spinali Infantili
Famiglie SMA Atrofia Muscolare Spinale
FISH Federazione Italiana per il Superamento dell'Handicap
FIAN — Federazione Italiana Associazioni Neurologiche
DPI Disabled Peoples' International
CND Consiglio Nazionale sulla Disabilità
Cittadinanzattiva
Since 1970, UILDM has been among the founders of EAMDA (European Alliance of Neuromuscular Disorders Associations)
UILDM National Office
Via Vergerio n. 19, 35126 – Padova
Official website: UILDM www.uildm.org
Phone: 049/8021001 – 757361
WhatsApp: 3489292780