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August 2018
The Periodic Paralysis Association’s 2018 Conference
This conference represents a unique opportunity for people affected by paralysis disorders such as primary periodic paralysis and hyperkalemic periodic paralysis to converge and learn more about their condition. Participants will be able to meet with medical experts and fellow patients in order to share their experiences and get the best, most reputable medical advice for their periodic paralysis. Registration for this event is completely free, but be prepared to cover travel and lodging expenses. Book your room by 6/1…
Find out more »September 2018
The National Fabry Disease Foundation’s Fabry Family Education Conference
This educational conference is tailored for patients and their families. Participants will have the opportunity to learn the latest information about treatment and Fabry disease research. The event will also include activities to help spread awareness about Fabry disease. Keep tabs on the conference website, where logistical details should be posted soon.
Find out more »The Myositis Association’s Annual Patient Conference
$225
The 2018 Annual Patient Conference This conference will be an opportunity for patients, their families, and caregivers to learn the latest in research for various forms of myositis, such as dermatomyositis and inclusion body myositis.
Find out more »The Coffin-Siris Syndrome Foundation’s Conference 2018
This patient conference will be a chance for patient families affected by Coffin-Siris syndrome to come together to learn more about the disorder. In addition attendees will be able to network, share stories, build community, and just have fun with each other. To learn more about this event, email [email protected].
Find out more »The European School of Haematology’s Annual John Goldman Conference on Chronic Myeloid Leukemia
$475
The 20th Annual John Goldman Conference on Chronic Myeloid Leukemia: Biology and Therapy This scientific, educational convergence will give all attendees the knowledge they need to understand the origins and mechanisms of chronic myeloid leukemia. In addition, sessions will also focus on the latest in treatment recommendations and diagnostics, as well as discussing potential routes of future research. Registration MD and or PhD: $475/$595 (Early bird/regular) Other health professionals and MD and PhD, in training: $275/$395 Corporate: $775/$1,095 Single day:…
Find out more »The Myotonic Dystrophy Foundation’s Annual Conference
$150
The 2018 MDF Annual Conference This event will be open to myotonic dystrophy patients, their families, researchers, health professionals, and caregivers. Attendees will have the opportunity to learn the latest in myotonic dystrophy research, treatment, diagnostics, and management. In addition, patient families will be able to share stories, network, and support each other. Registration $150/$250 (patients/professionals) Pricing will go up after 5/6.
Find out more »The International Society for Diseases of the Esophagus’s World Congress
870€
The 16th World Congress of the International Society for Diseases of the Esophagus This event will bring together researchers and medical experts across the world that specialize in diseases of the esophagus, such as esophageal cancer. Registration ISDE members: 680€/780€/870€ (Early/regular/late, onsite) Nonmembers: 870€/970€/1,070€ Trainees, nurses, fellows, students, residents, developing nation members: 370€/420€/460€ Additional person: 250€/270€/290€ ISDE member group registration: 580€ Early: before 5/18 Regular: before 8/20 Late, onsite: after 8/20
Find out more »The National Center on Shaken Baby Syndrome’s International Conference
$325
The 16th International Conference on Shaken Baby Syndrome/Abusive Head Trauma At this event experts will discuss the latest news and research related to shaken baby syndrome, as well as prevention efforts, family resources, and medical practices. Registration $175/$225/$275/$325/$425 (Students, families/group (10 or more)/group (5-9)/individual/physician)
Find out more »Charles River Laboratories’ 2nd Annual World Congress
$349
The 2nd Annual World Congress Lessons Learned From Rare Disease and Personalized Medicine Approaches This conference will explore strategies for drug discovery, innovative therapeutic approaches, and personalized medicine, with an emphasis on the rare disease sphere. Hear from health science experts as well as patient advocates about the future of rare disease community, treatment, and research. This event will also offer virtual attendance via a live stream feed for those who wish to attend but an otherwise unable to travel…
Find out more »The Progeria Research Foundation’s International Scientific Workshop
The 9th International Scientific Workshop "Many pathways. One goal." This event will promote collaboration between medical experts, researchers, and caregivers to work together to find a cure for progeria. The conference will feature presentations of scientific research related to the understanding and treatment of this disease. In addition, the conference will feature talks from patients so that they can share their prospective and reflect on their experiences. Registration for this conference is FREE
Find out more »The Castleman Disease Collaborative Network’s Patient and Loved One Summit
"Beating Castleman's, Together" This unique event allows for patients and families affected by Castleman disease to converge and learn more about the latest research and treatment information related to this disease. In addition, patient families will be able to network, build community, and share with each other. Keep your eye on the conference announcement webpage to learn logistical information, which should be posted soon.
Find out more »The Histiocytosis Association’s Paula’s Purple Passion Walk
$25
The Inaugural 2018 Paula's Purple Passion Walk The family fun walk is a fundraiser that will benefit the Histiocytosis Association. The event will also honor the memory of Paula Marie Wagman Ewing. Her friends and family will be in attendance. Help support the organization's goals to provide community support, fund research, spread awareness, and educate the public about histiocytosis The event will include a prize drawing. With each ticket, the purchaser will receive a T- shirt, a goodie bag, color…
Find out more »The Histiocytosis Association’s Histio Ty-Fighters 5K
The Histio Ty-Fighters 5K 2018 This exciting Star Wars themed 5K event is a family friendly opportunity to help support the activities of the Histiocytosis Association. Help support the Histiocytosis Association's goals of spreading awareness, educating the public, providing support, and funding histiocytosis research. Please note: while entrance to the Burke Lake Park is free for the residents of Fairfax County, non-residents will be expected to pay a fee of $10 if they arrive at the park after the race…
Find out more »The Carcinoid Cancer Foundation’s National NET Patient Conference
$125
The 2018 National NET Patient Conference This event will be an opportunity for patients suffering from a variety of diseases, such as carcinoid syndrome, to converge and learn more about their illnesses. In addition, patients and their families will have the opportunity to share stories and support one another. Registration $125/$200 (Patients and caregivers/Industry reps)
Find out more »October 2018
The FH Foundation’s 2018 FH Global Summit
$350
This invitation only event will feature global familial hypercholesterolemia experts, industry leaders, caregivers, and patients. The conference will feature speaker and panelists who will address a diverse array of subjects related to FH. Registration $350/$500 (Early bird/regular) Early bird: until 5/30 Regular: until 9/17
Find out more »The Foundation for Prader-Willi Research’s Annual Conference
$225
Research Symposium and Family Conference This event will feature a program of scientific research presentations as well as workshops for families of those affected by Prader-Willi syndrome. Registration Family Conference $225/$349 (Families and patients/standard) Family Conference and Research Symposium $450/$574 Research Symposium only: $225
Find out more »The Narcolepsy Network’s Annual Conference
At this conference, narcolepsy patients and their families will have the opportunity to learn about the latest in narcolepsy research, diagnostics, and treatment. In addition patient families will have the chance to network, share stories, and support one another. If you want to attend, make sure to check the event website periodically. Registration pricing should be posted soon.
Find out more »American Academy for Cerebral Palsy and Developmental Medicine’s Annual Meeting
AACPDM 72nd Annual Meeting "Transformative Journeys" This event is aimed at all researchers, medical professionals, and caregivers focused on cerebral palsy. The conference will present new information on cerebral palsy pertaining to research, treatments, and diagnostics. Registration for this event should open in late May. Keep tabs on the conference website for updates.
Find out more »The National Hemophilia Foundation’s Factor XIII Family Conference
"Strength in Numbers" This conference will be geared towards the families of those affected by factor XIII deficiency. This event will feature educational sessions that will allow patients to learn more about this rare blood disorder. Registration for the conference has not opened yet, so check the conference website for updates. More in-depth conference information should be available nearer the time. If you have questions, please email Meagan Richards. ([email protected])
Find out more »The Center for Information & Study on Clinical Research Participation’s Free Webinar
FREE WEBINAR The CISCRP's free webinar will serve as an opportunity for interested rare disease patients to learn more about the clinical trials process. Clinical trials can be an appealing option for receiving experimental treatment for rare disease patients that are running out of options. Attend this webinar for in-depth info about clinical trials and a panel discussion featuring professional researchers and former study participants.
Find out more »The International Pemphigus and Pemphigoid Foundation’s Annual Patient Conference
$250
The 21st Annual IPPF Patient Conference The annual conference for pemphigus and pemphigoid patients will offer several different tracks focusing on different topics related to these conditions that will allow patients to come away with a feeling of community and a new wealth of knowledge about the disease that affects them. Learn more about how to manage these conditions from fellow patients and pemphigus and pemphigoid experts. Registration $250/$150/$100 (Regular/ Conference Only/ Awards Dinner Only)
Find out more »The Spinal CSF Leak Foundation’s Annual Cedars-Sinai Intracranial Hypertension Symposium
Intercranial Hypotension Symposium This conference will feature scientific research presentations about intercranial hypotension and spinal CSF leaks. Keep tabs on the conference announcement page for more details, which should be posted soon.
Find out more »2018 International Waldenstrom’s Macroglobulinemia Foundation Events You Don’t Want to Miss
After the 10th International Workshop on Waldenstrom’s Macroglobulinemia for researchers and clinicians, the IWWM10 International Doctor- Patient Forum will be held in the same place on the same day. If you're interested in attending either of these events, the event website will keep you posted on updates and when you can begin to register!
Find out more »The Collaborative Group of the Americas on Inherited Colorectal Cancer’s Annual Meeting
The 2018 CGA Annual Meeting This meeting will be an opportunity for researchers and group members to present scientific findings related to inherited colorectal cancers such as familial adenomatous polyposis. Abstract submission will open on May 1st. Keep tabs on the event website, which should be updated with more info soon.
Find out more »The Cystic Fibrosis Foundation’s North American Cystic Fibrosis Conference
32nd Annual North American Cystic Fibrosis Conference (NACFC) NACFC will bring together people from across the medical field who have faced the challenge of treating cystic fibrosis firsthand. Attendees will learn the latest research and treatment info on cystic fibrosis. This event is open to therapists, scientists, researchers, caregivers, and industry representatives. Stay tuned at the conference website for future updates on logistics such as lodging and registration.
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