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Parent Project Muscular Dystrophy’s Annual Conference
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) […]
Find out more »The CdLS Foundation’s National Family Conference
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 […]
Find out more »The United Mitochondrial Disease Foundation’s Mitochondrial Medicine 2018
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 […]
Find out more »The Hydrocephalus Association’s National Conference
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 […]
Find out more »The MSUD Family Support Group’s 19th Biennial Group Symposium
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
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) […]
Find out more »The International Foundation For CDKL5 Research’s International CDKL5 Family Education and Awareness Conference
The 4th International Family Conference "UNITY FOR A CURE" This conference will be an opportunity for medical professionals, caregivers, and patient families to come together collaboratively to learn about the latest research and treatment for CDKL5. Registration for this conference is FREE
Find out more »The Alpha-1 Foundation’s Annual National Education Conference
27th Annual Alpha-1 National Education Conference This event will allow Alpha-1 and COPD patient families to learn more about their diseases and stay informed about the latest in research and disease information. Registration Standard/Guest/Teen/Child/Per day: $150/$135/$135/$110/$135
Find out more »The Cyclic Vomiting Syndrome Association’s International Adult and Family Conference
The 13th International Adult and Family Conference This conference will be an opportunity for the cyclic vomiting syndrome patient community to learn about a variety of subjects related to this condition. Registration Members: $175/$225/$275 (Single/Couple/Family) Non-members: $250/$300/$350 (Single/Couple/Family)
Find out more »Foundation for Ichthyosis and Related Skin Types’ National Conference 2018
20th Biennial FIRST National Conference "Tune in Together" Join the Foundation for Ichthyosis and Related Skin Types (FIRST) at their biennial national conference. People with ichthyosis bullosa of siemens, their families, and disease experts will come together to network, build community, and learn the latest in research and treatment. Registration $300/$120/$35 (Adult/child/toddler)
Find out more »The Pulmonary Hypertension Association’s 2018 International PH Conference and Scientific Sessions
"PHinding Your Hope" This is the largest gathering of the PH disease community in the world. This will be an opportunity for empowerment for patients with PH. Participants will learn about the best strategies to cope with this illness on a daily basis, as well as have the opportunity to consult with PH experts and […]
Find out more »The Cure JM Foundation’s National Conference and Fundraiser
The 2018 National Conference and Fundraiser This conference will be a change for patients and their families to meet one another to build community and support. In addition, disease experts will present the latest in juvenile dermatomyositis research.
Find out more »7:00 pm
The Alagille Syndrome Alliance’s First Annual Gala
The Gala of Dreams "The Dawn of a Dream" This is the first gala event hosted by the Alagille Syndrome Alliance (ALGSA). Open to all members of the Alagille syndrome patient community, the event will celebrate the latest achievements in research from scientists as well as the contributions from the health industry and nonprofit allies. […]
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