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AMCSI’s Annual Arthrogryposis Multiplex Congenita Conference
The 13th Annual Arthrogryposis Multiplex Congenita Conference This conference will be a chance for families affected by AMC to converge and share stories and support. In addition medical professionals and experts will be present to share the latest in AMC research and treatment. AMC families will be able to meet with them to learn more and […]
Find out more »The National PKU Alliance’s 2018 NPKUA Conference
"Advance the Dream" This conference will be a chance for PKU patients and their families to learn the latest about PKU research and treatment from disease experts. The event will also be a great opportunity for PKU families to share stories, build community, and network with each other. Registration Members: $299/$149/$99 (Families/individuals or extra family […]
Find out more »Little People of America’s National Conference
LPA National Conference Orlando 2018 This event will be a great opportunity for those affected by dwarfism and diastrophic dysplasia to build community and have fun with one another. This will also be an event that will provide an uplifting, educational program that will allow participants to learn more. For registration info, call 714-368-3689.
Find out more »APFED’s EOS Connection 2018
The 16th Annual Patient Education Conference This event is for patients and families that are affected by any eosinophilic disorders, such as eosinophilic gastroenteritis, Eisenmenger syndrome, eosinophilic esophagitis, and eosinophilic fasciitis. Attendees will learn the latest in research on these disorders, have opportunities to meets with medical experts, and share and network with one another. […]
Find out more »FOD Support Group’s International Metabolic Conference
2018 FOD/OAA International Metabolic Conference Families dealing with fatty oxidation disorders, methymalonic acidemia, and organic acidemias will feel right at home at this event. At this conference, patient families will be able to support and network with one another as well as learn the latest information about the fatty oxidation disorders and organic acidemias. Registration […]
Find out more »The Sotos Syndrome Support Association’s 2018 Conference
"Learn, Network, and Bond!" This event will be an opportunity for Sotos syndrome patients and families to come together for a weekend of support, community building, and education. Additionally, Sotos syndrome researchers will be in attendance to present the latest in research and treatment, and medical professionals will be available for personal consultations with […]
Find out more »The National Urea Cycle Disorders Foundation’s Annual Family Conference
The 2019 NUCDF Annual Family Conference This year's conference will be a unique opportunity for researchers, patients, families, and medical experts to come together and spread support and knowledge about urea cycle disorders. Participants will have a chance to learn the latest in research and treatment for urea cycle disorders and get informed about the […]
Find out more »Ongoing
The National Foundation for Ectodermal Dysplasias’ 2018 Family Conference
"Bridges to Inspiration" At the 2018 conference, families and patients affected by ectrodactyly-ectodermal dysplasia-cleft syndrome and other ectodermal dysplasias will be able to build community with each other, network, and share stories. In addition, medical experts will be available for one on one consultation in order to determine the best treatment profile for patients. Registration […]
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