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June 2018
The Multiple Sclerosis Association of America’s 2018 Multiple Sclerosis Summit
Multiple Sclerosis Summit MS Community Conference and Exposition This educational event will allow MS patients to learn the latest in MS research and hear from disease experts about the best methods for managing the condition in daily life. Registration for this event is FREE.
Find out more »Soft Bones’ International HPP Meeting
2018 International HPP Meeting This is an invitation only event open to physicians, scientists, and researchers. The Soft Bones Scientific Advisory Board will be responsible for sending invitations and determining the agenda.
Find out more »Cure SMA’s Annual SMA Conference
$215
The 2018 Annual SMA Conference This conference will bring together researchers, medical experts, scientists, and patient families to build community, learn, collaborate, and network. The conference consists of two parallel programs: one intended for researchers and professionals, and another for patients and families. Registration Adults: $215 Child: $60
Find out more »The Foundation for Sickle Cell Disease Research’s 12th Annual Symposium
$295
Sickle Cell Disease Research and Educational Symposium "From Biology to Therapy: Improvement of Therapeutic options for clinical care in sickle cell disease" This conference will present the latest research and findings related to sickle cell disease treatment. Registration Patients/Caregivers/Advocates/Medical Students: $295 Emeritus: $425 Fellow/Nurse/Physician Assistant/Social Workers: $565 Medical Professionals/Physicians/Doctors: $895
Find out more »Penn Center for Musculoskeletal Disorders’ Advances in Rare Musculoskeletal Disorders Symposium
Advances in Rare Musculoskeletal Disorders Symposium This event will feature keynote addresses from internationally renowned musculoskeletal disorder experts, who will address subjects such as Marfan syndrome. The event will include five talks from experts and three moderated scientific sessions that will feature in-depth discussion. Registration for this event is free.
Find out more »The CCHS Network’s 5th International CCHS Conference
$200
"The Future is NOW—Priorities, Partnerships, and Patient Voice" The conference will be an event for health professionals and CCHS patient community to come together in collaboration, communication, and support. Attendees will learn about the latest in CCHS research and treatments. Registration Members: FREE Professionals/Non-members: $200 With dinner (one person/two people): $250/$300
Find out more »The Pitt-Hopkins Research Foundation’s Family Conference & Scientific Symposium
$40
2018 Family Conference & Scientific Symposium This conference will be an opportunity for Pitts-Hopkins syndrome patients and medical researchers to come together, collaborate, and network. Patients and their families will have the opportunity to learn the latest in treatment and research. Registration Parents, caregivers (single day): $40 Adult lunch (per day): $10 Child lunch, 0-18 (per day): $5 Thursday symposium: $100 Thursday scientific symposium will be at Radisson Blu Mall of America 2100 Killebrew Drive, Bloomington, MN 55425.
Find out more »Choroideremia Research Foundation’s 2018 Conference
$100
2018 CRF Conference The conference will be a chance for families impacted by choroideremia to share with one another and build community. Conferences are held every two years and are opportunities to learn about the latest research and treatments for choroideremia. Registration Early registration (until 4/15): $100/$25/FREE (Adult/Teens/Children 12 and under) Regular registration: $125/$50/FREE (Adults/Teens/Children 12 and under)
Find out more »Alternating Hemiplegia of Childhood Foundation’s Family Meeting 2018
$50
Family Meeting 2018 This is an opportunity for families affected by alternating hemiplegia of childhood to come together and realize that they are not alone. Families will meet up to share stories, struggles, and advice. Registration Family of 5 or less: $130/$180 (before 5/15/after 5/15) Couple: $80/$130 (before 5/15/after 5/15) Individuals: $50/$75 (before 5/15/after 5/15) Caregivers and extra family members: $25/$30 (before 5/15/after 5/15) Speakers, researchers, clinical professionals: free
Find out more »Dysautonomia International’s 6th Annual Conference
$275
"Together We Rock" This conference will consist of educational seminars, patient advocacy training, and inspiring public speakers. This conference will focus on autonomic disorders such as postural orthostatic tachycardia syndrome. Patients, researchers, caregivers, industry reps, and nonprofit leaders are invited to attend the event. Registration Before May 11th, 2018: $275 After May 11: $325
Find out more »PSC Partners Seeking a Cure’s 2018 Annual Conference
$220
14th Annual Conference The conference will be an opportunity for caregivers and patients to share and collaborate with one another. Topics will include the latest in primary sclerosing cholangitis news, research, and treatments. No one under age 13 is permitted to attend the conference. Registration Early bird (until 4/8): $200 Regular (4/9-5/28): $220 Late (5/29-6/9): $250 Medical Providers and Corporate Professionals (through 6/9): $310
Find out more »The Cutaneous Lymphoma Foundation’s Patient Conference
This two day conference will be an opportunity for the cutaneous T-cell lymphoma patient community to come together and build community and fellowship. In addition, attendees will have the opportunity to learn the latest in clinical research and treatments related to cutaneous T-cell lymphoma. Registering for this event is free, although hotel accommodations are not included.
Find out more »The United Leukodystrophy Foundation’s Scientific Symposium and Family Conference
$150
The 2018 Scientific Symposium and Family Conference This conference will consist of a scientific symposium program that will allow medical professionals and researchers to present the latest research in the field of leukodystrophy. There will also be a separate family conference that will allow members of the leukodystrophy patient community to network, share stories, and collaborate. Registration Family Conference Adult members/non-members/teens: $100/$150/$50 Children (12 and under): FREE Scientific Symposium: $300
Find out more »Aplastic Anemia and MDS International Foundation’s Living with Aplastic Anemia, MDS, and PNH Conference
A patient and family conference for people with aplastic anemia, myelodysplastic syndromes, paroxysmal nocturnal hemoglobinuria, and acute myeloid leukemia. Nurses, caregivers, or other health professionals are also encouraged to attend. Learn more information about facing these diseases every day and meet powerful survivors that can understand the challenges.
Find out more »Aplastic Anemia and MDS International Foundation’s Patient Conference
The 7th Seattle Patient Conference: Aplastic Anemia, MDS, and PNH A patient and family conference for people with aplastic anemia, myelodysplastic syndromes, paroxysmal nocturnal hemoglobinuria, and acute myeloid leukemia. Nurses, caregivers, or other health professionals are also encouraged to attend. Learn more information about facing these diseases every day and meet powerful survivors that can understand the challenges. Registration for this conference is free.
Find out more »The Oley Foundation’s Annual Conference
The 2018 Oley Consumer/Clinician Conference This conference will be an opportunity for patients with short bowel syndrome or other conditions that must use intravenous nutrition and feeding tubes to learn more about these therapies. In addition, participants will be able to consult with care providers and clinicians in order to get their questions answered. Registration is free for caregivers, consumers, faculty, and family members. Room reservations General participants: $164/night Exhibitors: $229/night
Find out more »CISCRP’s Heroes Appreciation 5K Run & Walk – Boston
CISCRP hosts a 5K to honor and celebrate the volunteers who have donated time to help with clinical trial research. Fee: $30
Find out more »The SATB2 Gene Foundation’s 2018 International Conference
The 2nd Annual International Conference This conference is open to SATB2-associated syndrome patients, their families, caregivers, and medical experts. The event will be an opportunity to share the latest news in research and treatment for SATB2-associated syndrome. Registration closed for this event on March 31st, 2018.
Find out more »Parent Project Muscular Dystrophy’s Annual Conference
$150
This is the largest international conference dedicated to Duchenne muscular dystrophy in the world. Families affected by Duchenne muscular dystrophy will gather to share stories, network, and build community. In addition, attendees will get to learn about the latest research and treatment news. Registration Family rates: $150/$200/$250 (Early/Regular/Late) Professional/Industry rates Industry sponsor reps: $550/$600/$660 (Early/Regular/Late) Non-sponsor industry reps: $750/$800/$860 Academic/medical professionals: $325/$350/$425 Early registration: 3/22-4/22 Regular registration: 4/23-5/23 Late registration: 5/24-6/24
Find out more »The CdLS Foundation’s National Family Conference
$390
Biennial Conference This conference will be a chance for families affected by Cornelia de Lange syndrome to interact one on one with medical experts, build community with each other, and learn how to manage the syndrome on a daily basis and face the challenges ahead. Registration Adults: $390 Caregivers: $260 Children: $205/FREE (age 3-17/age 2 and under) Patients: FREE One-day professional: $110 Banquet: $55/$35 (kids/adults)
Find out more »The United Mitochondrial Disease Foundation’s Mitochondrial Medicine 2018
$115
This symposium will be an opportunity for medical researchers from around the world to present the latest data, research, and findings related to mitochondrial disease. The event will also include content for patients and their families to learn more about mitochondrial disease. Registration (patient/family program) Early Bird/After May 31st Individual registration: $115/$230 Family registration: $225/$450 Teen sessions/event: $35/$45 Daily rate: $42/$85 Industry reps (family program): $400/$500
Find out more »The Hydrocephalus Association’s National Conference
$380
The 15th National Conference on Hydrocephalus: HA Connect This conference will be an opportunity for medical professionals, caregivers, patients, and their families to converge and learn about the latest development in hydrocephalus research and treatment. In addition, participants will learn about what it takes to live and manage hydrocephalus on a daily basis. Registration $380/$660/$940/$1220 (single/double/triple/four or more)
Find out more »The MSUD Family Support Group’s 19th Biennial Group Symposium
$25
The MSUD Biennial Symposium This event will feature presentations of the latest maple syrup urine disease research and treatments. Registration - $25 (Max= $75/family)
Find out more »PMD Family Support Group’s Annual Conference
The 2018 Annual Conference This conference will feature a program that focuses on the latest research and information for Pelizaeus-Merzbacher disease. Discounted $119/night rate for participants.
Find out more »Kids Get Arthritis Too’s 2018 JA Conference
$150
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:…
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