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July 2018
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 be expected to pay £100 per day. All participants are responsible for covering accommodations.
Find out more »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 having fun together. Registration Adult: $250/$300/$350 (Early/regular/late) Early registration: before 5/1 Late registration: after 6/29 Dinner only: $150/$25 (Adult/child)
Find out more »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 18. Registration $135/$85 (Adults/Child) Picnic: $35/$25 Thursday: $62 Children under age 5 are free.
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 and treatment updates for Krabbe disease and other leukodystrophies. For registration information, please contact Hunter's Hope via email at [email protected].
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 advice, and empower one another. Registration (ends July 13th) Families/caregivers: $200 ($100 single day) Professionals: $250 ($125 single day)
Find out more »The Noonan Syndrome Foundation’s 2018 Conference
$200
The 2018 Noonan Syndrome Foundation Conference The event will be an opportunity for Noonan syndrome patients and their families to share their experiences with one another and build community. This will also be a chance to learn about the latest news in research and treatment. Families can also learn about day to day disease management and how to cope with specific symptoms with direct consultations with Noonan syndrome experts. Registration $200/$125 (Adults/children)
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 »International Symposium on Usher Syndrome and 10th Annual Usher Connections Conference
Put Europe on your calendar for 2018! Usher patients, researchers and family members welcome to the two-day Symposium in July. For more information, contact [email protected]
Find out more »PRISMS’ International SMS Conference
$260
The 10th International SMS Conference "Honoring the Past, Treasuring the Past, Shaping the Future" The event will be an opportunity for SMS patients and their families to share their experiences with one another and build community. This will also be a chance to learn about the latest news in research and treatment. Families can also learn about day to day disease management and how to cope with specific symptoms. Registration $75/$100/$260/$315 Patient/child/adult/professional
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) $315/$275/$190
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
Find out more »American Syringomyelia & Chiari Alliance Project’s Great Expectations Annual Conference
$175
ASAP Chiari & Syringomyelia Conference This event will be an opportunity for chiari and syringomyelia patients and their families to network with one another. Participants will also be able to learn about the latest in chiari and syringomyelia treatment and research. Registration $490/$175/$95 Families/adults/children Single day: $70 Banquet: $75
Find out more »The Tuberous Sclerosis Alliance’s World TSC Conference
$249
2018 World TSC Conference This event will be an opportunity for tuberous sclerosis patients and their families to network with one another. Participants will also be able to learn about the latest in tuberous sclerosis treatment and research. Registration Early bird (before 6/1) $249/$199/$99 (Full conference/two days/one day) Regular (after 6/1) $350/$275/$145
Find out more »The Five P Minus Society’s 2018 5P Society Conference
$200
The 5P Minus Society Conference of Champions The conference will an opportunity for families affected by cri du chat syndrome (5P minus) to engage and learn from one another. This meeting of the patient community will be a great opportunity to share stories and challenges. In addition, attendees will have the opportunity to learn that latest in research and treatment for cri du chat syndrome and related disabilities. Registration Early bird (before July 1st) Family registration(four people max): $150/$200/$75 (members/nonmembers/professionals)…
Find out more »The Scleroderma Foundation’s National Patient Education Conference
$250
The 2018 Scleroderma Foundation National Patient Education Conference The event will be an opportunity for scleroderma patients and their families to come together for a time of solidarity, community building, and networking. In addition, patients will be able to learn the latest about scleroderma research and treatments, as well as managing the disease on a daily basis. Registration Early bird (until 5/30) $75/$145/$200/$250/$495 (child/meals only/member/nonmember/corporate reps)
Find out more »The Scleroderma Foundation’s National Patient Education Conference
$250
The 2018 Scleroderma Foundation National Patient Education Conference The event will be an opportunity for systemic scleroderma patients and their families to come together for a time of solidarity, community building, and networking. In addition, patients will be able to learn the latest about systemic scleroderma research and treatments, as well as managing the disease on a daily basis. Registration Early bird (until 5/30) $75/$145/$200/$250/$495 (child/meals only/member/nonmember/corporate reps)
Find out more »The Bohring-Opitz Syndrome Foundation’s BOS Family Meet-Up
The 2018 BOS Family Meet-Up This conference will be an event of support and celebration for BOS patients and their families. Attendees will be able to network, share stories, and learn from one another about strategies for managing BOS. Stay tuned at the event website for more logistical information to be announced soon.
Find out more »August 2018
The National MPS Society’s 15th International Symposium
$275
The 15th International Symposium on MPS and Related Diseases An event geared towards both medical experts and families affected by MPS diseases such as Chudley Rozdilsky syndrome and Hurler syndrome, this conference will bring the international MPS community together. The event will feature cutting edge presentations of the latest research and treatment information, as well as helpful tips for disease management and uplifting stories. Registration All patients are eligible for free attendance. Families: $275/$325/$375/$250 (Early/regular/onsite/one day) Children: $125/$175/$225/$125 Physicians/researchers: $600/$700/$800/$300…
Find out more »The National Niemann-Pick Disease Foundation’s Annual Family Conference
$75
NNPDF's 26th Annual Family Conference This event is geared towards the families affected by Niemann-Pick disease. The conference will be a unique and exciting opportunity for attendees to learn the latest in research and treatment for Niemann-Pick disease. Patient families will also have the chance to share stories and support each other. Registration Early bird (by 6/14) $75/$50/$100/$450 (Immediate adult family/children/educators, medical professionals/corporate) Regular (by 7/6) $125/$100/$150/$450
Find out more »Kids Get Arthritis Too’s 2018 JA Conference
$200
A patient and family conference for patients and families affected by juvenile arthritis. Nurses, caregivers, or other health professionals are also encouraged to attend. Learn more information about facing juvenile idiopathic arthritis on a daily basis, build community, share your stories, and learn the latest in treatment and disease research. Registration Early Bird (until 4/30) Family rate (up to 4 people): $250 Additional family member: $25 Individuals: $150 After 4/30 Family rate (up to 4 people): $350 Additional family member:…
Find out more »The Angelman Syndrome Foundation’s 2018 Research Symposium
$275
Angelman and Dup15q Syndromes: Shared Pathways to Discovery This event will consist of two days of scientific research presentations pertaining to Angelman syndrome and dup15q syndrome. The symposium will also feature unpublished work, as well as allow for in-depth discussion. Registration Early bird (Until July 9th) $150/$275 (Students/adults) Regular $175/$325
Find out more »Kern Lipid Conference 2018
$900
Metabolic Regulation of Immunity, Cardiometabolic Diseases, and Cancer: New Therapeutic Approaches A conference that is geared towards the medical and scientific community, this event will allow medical professionals, researchers, and industry representatives to present and discuss research focused on lipid metabolism and diseases associated with it, such as bile acid synthesis disorder. Registration Students: $250 Academic professionals: $900 Industry reps: $1,900
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