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The National Fragile X Foundation’s 16th International Conference
$525
The 16th NFXF International Fragile X Conference This event will cover all fragile X disorders and is the largest fragile X event in the world. Caregivers, families, patients, and medical professionals are all encouraged to attend. Families will be able to network, support, and share with one another as well as consult directly with fragile […]
Find out more »The Williams Syndrome Association’s National Convention
$400
The 2018 National Convention At this event, Williams syndrome patients and their families will have a chance to learn the latest in research, treatment, and diagnostics from widely reputed Williams syndrome experts. Registration Standard (Until 5/15): $200/$250/$400/$550 (one adult 1 day/two adults 1 day/one adult/two adults) Late registration (5/16 and after): $225/$300/$450/$600 Patient/youth programs (Standard): […]
Find out more »The Marfan Foundation Hosts 2018 Annual Conference – Santa Clara, California
The conference will take place is Santa Clara, California July 12th-15th. To register, please sign-up for emails by visiting the website below.
Find out more »National Organization for Albinism and Hypopigmentation’s NOAH Conference 2018
$185
#NOAHCon2018 The event will be an opportunity for members of the albinism community to come together, share stories, and build community. Participants will be able to learn the latest about albinism research. Registration Early deadline: 4/16/18 $110/$185/$300 (children 5 and under/ages 5 and up/professionals) Regular deadline: 5/14/18 $135/$240/$375
Find out more »The MAGIC Foundation’s 24th Annual Convention
$195
The 24th Annual Convention This conference is available to patients and their families that are affected by septo-optic dysplasia and other disorders that impact a child's growth and development. It will serve as an opportunity to meet other members of the septo-optic dysplasia patient community and learn more from experts about the latest information about […]
Find out more »The Marfan Foundation’s Annual Conference
$375
This conference is available to children and adults affected by Marfan syndrome and their families. It will serve as an opportunity to meet other members of the Marfan syndrome patient community and learn more from experts about the latest information about this syndrome. Participants will also learn about best practices for managing the condition […]
Find out more »Osteogenesis Imperfecta Foundation’s National Conference
$195
2018 OIF National Conference This conference is available to children and adults affected by osteogenesis imperfecta and their families. It will serve as an opportunity to meet other members of the OI patient community and learn more from experts about the latest information about the condition. Participants will also learn about best practices for managing […]
Find out more »The Platelet Disorder Support Association’s ITP Conference 2018
$150
Annual ITP Conference This event will be an opportunity for ITP patients and their families to learn the latest info on ITP research and treatment from medical experts. In addition, families will be able to network, build community, and support one another. Registration Members: $125/$50/$100 (adult/child/single day) Nonmembers: $150/$60/$120
Find out more »The National Neutropenia Network’s Neutropenia Family Conference
$250
2018 Neutropenia Family Conference The Neutropenia Family Conference will be a convergence of health providers, researchers, and industry leadership to present the latest research and treatments in the field of neutropenia to the patient community. The event will also be an opportunity for neutropenia patients and their relatives to network and share their experiences with […]
Find out more »Stickler Involved People’s SIP National Conference
$60
The 2018 SIP National Conference This meeting is for anyone who is part of the Stickler syndrome community, such as syndrome experts, researchers, caregivers, patients, and their families. Registration $25/$60/$100 (Childcare/families/after 6/20)
Find out more »The Myotubular Trust’s Family Conference 2018
£100
Family Conference 2018 "Together Even Stronger" This conference will be open to patients affected by myotubular and centronuclear myopathies, their families, and caregivers. The event will feature workshops and speakers that will help inform participants abouts the latest in research and treatment. The conference is FREE for patients, their families, and caregivers. Other guests will […]
Find out more »Ongoing
The Aicardi Syndrome Foundation’s 2018 Family Conference
The 2018 Aicardi Syndrome Family Conference At this event, attendees will be able to meet other families that have been affected by Aicardi syndrome. In addition, the conference will be an opportunity to learn the latest in Aicardi syndrome research and treatment. Registration for this conference is completely free, but attendees must be prepared to […]
Find out more »8:00 am
The International 22q11.2 Foundation’s Biennial International 22q11.2 Conference
$250
The 11th Biennial International 22q11.2 Conference This event is open to families affected by DiGeorge syndrome (22q11.2) and other deletion duplication syndromes. Participants will learn the latest information about these conditions from leading experts in the research field. Families will also have the opportunity to network and share with one another, as well as just […]
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