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February 2018
The Penn Medicine Orphan Disease Center – 5th Annual Million Dollar Bike Ride – Rare Disease Day – Philadelphia, PA
The Penn Medicine Orphan Disease Center invites you to Rare Disease Day with the 5th Annual Million Dollar Bike Ride in Philadelphia, PA. Cycle with fundraising: FREE Cycle without fundraising: $45 Email Samantha at [email protected]
Find out more »March 2018
Alabama Rare – Rare Disease Symposium – Birmingham, AL
Alabama Rare is hosting the 5th annual rare disease genetics symposium with intent to educate and advise patients, caregivers and medical professionals on how to manage their disease. March 2nd: 8A-4P March 3rd: 9A-1P Please RSVP to [email protected] by Monday, Feb. 12th to reserve your spot. March 3rd is free to everyone and March 2nd has a registration fee, yet it will be waived for patients/caregivers as well as family members.
Find out more »Alabama Rare – Rare Disease Day Advocacy Training & State House Advocacy Event – Montgomery, AL
Alabama Rare hosts the 3rd Rare Disease Day Advocacy Training & State House Advocacy Event in Montgomery, AL. It's a great way for advocates to get connected and meet state legislators. March 6th: 2P-5P Alabama State House March 7th: 8A-3P - 6th Floor Lobby of Alabama State House RSVP to [email protected] with your name, county, rare disease and state legislators names.
Find out more »Festival of Children – The RARE Carousel of Possible Dreams – Danny’s Dose – Dream Team Celebration
The Festival of Children hosts the RARE Carousel of Possible Dreams, a Dream Team Celebration in Chesterfield, Missouri on Saturday, March 10th, 2018. The event will be filled with fun: carousel rides, crafts, snacks, prizes and more. They hope to bring awareness and raise funds for families living with rare diseases and for Danny's Dose organization. Tickets - $5
Find out more »Patients as Partners 5th Annual Conference – US
The only conference in the United States that shows guidance as how to involve patients through the process of clinical research. Industry Fees: $1,595 Early Bird - available until 2/09/18 $1,695 Standard - available until 3/09/18 $1,795 Last Call - available after 3/09/18 Academia Fees: $797.50 Early Bird - available until 2/09/18 $847.50 Standard - available until 3/09/18 $897.50 Last Call - available until 3/09/18
Find out more »April 2018
The National Ataxia Foundation’s 2018 Annual Ataxia Conference
$205
Presenting the 61st Annual Ataxia Conference (AAC) "Fighting for Freedom" Attendees have a lot of reasons to be excited about this year's AAC. There are multiple promising treatments in trials that have the potential to change the plight of ataxia patients forever. This conference is the largest annual meeting of ataxia patients on the planet. Over the two day event, participants have the opportunity to meet with fellow patients, vendors, and medical experts to learn about how to manage ataxia…
Find out more »The Ehlers-Danlos Society’s European Ehlers-Danlos Syndromes Conference
€75
This conference will be a convergence of disease experts, patients, and professionals to discuss Ehlers-Danlos syndrome and other related genetic disorders. The event will be the first conference that the society has held in Europe, and it will present a new opportunity for experts and patients from across the continent to network and assist each other. Registration for the conference is full for Saturday, but there are still slots available for Friday.
Find out more »American Cleft Palate-Craniofacial Association’s 75th Annual Meeting
$840
This conference presents an opportunity for medical professionals to share knowledge and learn more about new research advances in clinical care and discuss the future of the craniofacial field. The meeting will include over 300 presentations of research and scientific findings. Registration Fees (on or before 3/31): professional member: $550 (onsite, 4/14: $650) professional non-member: $840 (onsite, 4/14: $940) student/transitional member: $125 (onsite, 4/14: $175) student non-member: $295 (onsite, 4/14: $345) life member: $50 (all times)
Find out more »The National Tay-Sachs & Allied Diseases Association’s 2018 Annual Family Conference
$320
Presenting the 40th Annual Family Conference Join NTSAD for three days of education, support, and empowerment for Tay-Sachs, Sandhoff, Canavan, and GM1 patients and their families. Adult: $320 (ages 13 and up) Child: $150 (ages 3-12) Affected kids are eligible to attend free of charge.
Find out more »The Sjögren’s Syndrome Foundation’s National Patient Conference
$210
The 2018 National Patient Conference SSF's National Patient Conference is the an ideal opportunity for patients with Sjögren's syndrome and their families to learn more about what it means to live with this syndrome as well as meet other members of the Sjögren's syndrome patient community. Medical experts will discuss a diverse array of topics related to the syndrome and address the pressing questions that attendees may have. Registration SSF members and guests: $190 Non-members: $210
Find out more »Myasthenia Gravis Foundation of America’s National Conference
$225
Presenting the 2018 National Myasthenia Gravis Conference This conference is the largest gathering of the myasthenia gravis community in the country. This year, participants will converge to hear from disease experts and share with fellow patients about their experiences in order to learn more about living with myasthenia gravis. Full registration: The complete, three day program includes Awards Dinner, Opening Reception and all other conference meals. $225 per person. Student Health Professionals: $145 for full registration Nurses Advisory Board Members:…
Find out more »Global Genes’ 2018 LEMS Community Development Workshop
Connect, Enpower, and Inspire This free workshop will available for both caregivers and LEMS patients. Participants will learn new strategies for promoting advocacy and the development of community. The event will be in collaboration with the Myasthenia Gravis Foundation of America's national conference, which will occur at the same time and location.
Find out more »The Foundation for Sarcoidosis Research’s Chicago Patient Conference
$10
This conference will be an opportunity for patients to learn from highly regarded physicians and specialists about sarcoidosis. Patients and their families will have a unique chance to learn about options for treating sarcoidosis, standards of care, and the research projects that are supported by the foundation. Everyone that plans to attend must fill out an individual registration.
Find out more »The Huntington’s Disease Society of America’s Research Webinar
The HDSA Research Webinar This free webinar will present research from Dr. Jack Reidling. Dr. Reidling has been conducting experiments with stem cells by using them to replace the dead brain cells in mice with Huntington's disease. You can register for the webinar here: https://register.gotowebinar.com/register/8070448723031915521
Find out more »The Cystinosis Research Foundation’s Day of Hope Family Conference
Presenting the CRF 2018 Day of Hope Family Conference The event will be an opportunity for cystinosis patients and their families to share their experiences with one another and build community. This will also be an opportunity 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. Attendance for the conference is free. Hotel room rate for cystinosis patients/families: $195/night $225/night plus…
Find out more »CISCRP’s AWARE for All – D.C.
FREE educational program provided by CISCRP, The Center For Information & Study On Clinical Research Participation, created to educate the public about participating in clinical trial research.
Find out more »HCU Network America’s Taking The Lead For HCU Conference
Introducing the very first HCU Network America Conference This conference is available to children and adults affected by HCU and their families. It will serve as an opportunity to meet other members of the HCU patient community and learn more from experts about the latest information about homocystinuria. Participants will also learn about best practices for managing the condition, such as dietary recommendations. Attendance is free, but budget for travel and hotel costs. Travel scholarships are available to help cover…
Find out more »The Guthy Jackson Charitable Foundation’s 10th International NMO Roundtable Conference
This event will be an opportunity for researchers, industry leaders, nonprofit organizations, and more to converge and learn about the latest research and solutions related to neuromyelitis optica.
Find out more »Debbie’s Dream Foundation’s Stomach Cancer Education Symposium and Webinar
The 8th Annual Stomach Cancer Education Symposium This education symposium will be presented for both in-person attendees and live with an online webcast. This is a free event and anyone who wants to learn more about the fight against stomach cancer, including patients, caregivers, medical professionals, and the general public are invited to attend.
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. Registration is free and conference attendees are eligible for a negotiated nightly rate of $129 at Houston Marriott Medical Center/Museum District. Scurlock Towers garage parking is $13 daily and there is a $28 valet option…
Find out more »Alkaptonuria Society – Second International Patient Workshop – Liverpool
Alkaptonuria Society, AKU, hots their Second International Patient Workshop in Liverpool, England. This event is for patients, caregivers and friends to learn more about Alkaptonuria. To attend the workshop, please email: [email protected]
Find out more »Hanson Wade’s 2nd Annual NASH Summit
$3997
Presenting the 2nd Annual NASH Summit 2018 This summit will specialize keeping drug companies and research organizations up to date on new information relevant to the development of new treatments for non-alcoholic steatohepatitis. This will include topics such as developing drugs as part of combination treatments, establishing clinical endpoints, improving drug effectiveness, and utilizing biomarkers. Registration fees: Gold (conference + workshops): $3997 Silver (conference + 1 workshop): $3398 Bronze (conference only): $2799 Per workshop: $699 *There are also team discounts…
Find out more »ACS Global Management’s Pancreas 2018: Innovations in the Care of Pancreatic Cancer
$700
Presenting Pancreas 2018 This conference will be an opportunity for pancreatic cancer specialists and experts to interact with one another and discuss the latest developments, discoveries, and treatment innovations for pancreatic cancer. Educational sessions will cover subjects such as treatment, prevention, patient care, and research. Registration Delegates: $700 Students and Trainees: $550
Find out more »The National Ovarian Cancer Coalition’s 2018 National Conference
$239
The 2018 National Conference will be a convergence of health providers, researchers, and industry leadership to discuss the latest research and treatments in the field of ovarian cancer. The event will also be an opportunity for cancer survivors, patients, and their relatives to network and share their experiences with one another. Registration Early bird registration: $139 Standard registration: $239 One-day registration: $139
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