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…
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…
The MSUD Biennial Symposium This event will feature presentations of the latest maple syrup urine disease research and treatments. Registration - $25 (Max= $75/family)
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.
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…
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…
CISCRP hosts a 5K to honor and celebrate the volunteers who have donated time to help with clinical trial research. Fee: $30
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…
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…
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…
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…
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…
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…
"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.…
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,…
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…
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…
Patient Worthy's partner The MDS Foundation will be hosting a patient forum and and their first ever awareness walk in July! The 5k will be held July 20th and the…
"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…
PatientWorthy will be offering a pair of tickets to the Alagille Syndrome Alliance's (ALGSA) First Annual Gala. The tickets will be available for patients or caregivers in the San Diego…
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…
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…
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…
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 Danny’s Dose Alliance is very pleased to announce our latest project, “Saving Lil Lives” in honor of the 1 Year Anniversary of passing EMS Emergency Treatment Protocol Legislation in Missouri on May 12,…
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