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SOFT’s SOFT Medical & Family Conference
$135
The 32nd Annual Medical & Family Conference This conference will be a chance for the trisomy 18 patient community to come together, to share stories, spread support, and build community. In addition, participants will learn the latest in trisomy 18 research and treatments, and will have the opportunity to learn new strategies for managing trisomy […]
Find out more »Hunter’s Hope’s 2018 Family Symposium
Freedom & Hope This event will be a chance for patients and families affected by Krabbe disease and other leukodystrophies to come together for to build community, spread hope, and share stories in an environment free from judgement. The family conference will be preceded by a invitation-only medical symposium that will present that latest research […]
Find out more »The Dravet Syndrome Foundation’s 2018 DSF Conference
$200
2018 Biennial DSF Family and Professional Conference Don't miss this three day conference that will allow caregivers, medical, professionals, and families to converge, network, and learn. Dravet syndrome experts will present the latest in research, treatment, and day to day management of this condition. Families will have the opportunity to build community, share stories and […]
Find out more »The Batten Disease Support and Research Association’s Family Conference
The 2018 BDSRA Family Conference "Walk the Line For a Cure" This event is an invitation for the Batten disease patient community, including advocates, families, and patients themselves, to converge and learn the latest in disease research, best practices, and treatment. Registration ends June 27th, 2018. To learn more info, email [email protected]
Find out more »Beckwith-Wiedemann Children’s Foundation International’s BWS Family Conference
$100
BWS Family Conference 2018 This event will be a chance for families affected by BWS to come together, build community, share stories, and network with one another. In addition, the conference will feature individualized clinical evaluations with a variety of treatment specialists. Registration: $100
Find out more »The Moebius Syndrome Foundation’s 2018 Conference
$280
The 13th Moebius Syndrome Foundation Conference This event will be an opportunity for patients and families to learn the latest info from Moebius syndrome experts. Families will learn about a variety of subjects, such as managing potential complications, the latest in Moebius syndrome research, and more. Registration Early bird (until 4/30) $280/$230/$150 (Adults/teens/children) Regular (5/1-7/13) […]
Find out more »Debra of America’s 2018 Debra Care Conference
$600
This event will be an opportunity for epidermyolsis bullosa patients and their families to network with one another. Participants will also be able to learn about the latest in epidermyolsis bullosa treatment and research. Registration EB families: $600 General attendee: $900
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