Freedom & Hope This event will be a chance for patients and families affected by Krabbe disease and other leukodystrophies to come together for to build community, spread hope, and…
THE 9TH INTERNATIONAL SCIENTIFIC, MEDICAL & FAMILY CONFERENCE "Power Up!" This event will be a convergence of health providers, researchers, and industry leadership to present the latest research and treatments…
The 11th Biennial International 22q11.2 Conference This event is open to families affected by DiGeorge syndrome (22q11.2) and other deletion duplication syndromes. Participants will learn the latest information about these…
2018 OIF National Conference This conference is available to children and adults affected by osteogenesis imperfecta and their families. It will serve as an opportunity to meet other members of…
Annual ITP Conference This event will be an opportunity for ITP patients and their families to learn the latest info on ITP research and treatment from medical experts. In addition,…
2018 Neutropenia Family Conference The Neutropenia Family Conference will be a convergence of health providers, researchers, and industry leadership to present the latest research and treatments in the field of…
The 2018 SIP National Conference This meeting is for anyone who is part of the Stickler syndrome community, such as syndrome experts, researchers, caregivers, patients, and their families. Registration $25/$60/$100…
Family Conference 2018 "Together Even Stronger" This conference will be open to patients affected by myotubular and centronuclear myopathies, their families, and caregivers. The event will feature workshops and speakers…
The 2018 Aicardi Syndrome Family Conference At this event, attendees will be able to meet other families that have been affected by Aicardi syndrome. In addition, the conference will be…
#NOAHCon2018 The event will be an opportunity for members of the albinism community to come together, share stories, and build community. Participants will be able to learn the latest about…
The 24th Annual Convention This conference is available to patients and their families that are affected by septo-optic dysplasia and other disorders that impact a child's growth and development. It…
This conference is available to children and adults affected by Marfan syndrome and their families. It will serve as an opportunity to meet other members of the Marfan syndrome…
The conference will take place is Santa Clara, California July 12th-15th. To register, please sign-up for emails by visiting the website below.
The 16th NFXF International Fragile X Conference This event will cover all fragile X disorders and is the largest fragile X event in the world. Caregivers, families, patients, and medical…
The 2018 National Convention At this event, Williams syndrome patients and their families will have a chance to learn the latest in research, treatment, and diagnostics from widely reputed Williams…
"Bridges to Inspiration" At the 2018 conference, families and patients affected by ectrodactyly-ectodermal dysplasia-cleft syndrome and other ectodermal dysplasias will be able to build community with each other, network, and…
LPA National Conference Orlando 2018 This event will be a great opportunity for those affected by dwarfism and diastrophic dysplasia to build community and have fun with one another. This…
The 16th Annual Patient Education Conference This event is for patients and families that are affected by any eosinophilic disorders, such as eosinophilic gastroenteritis, Eisenmenger syndrome, eosinophilic esophagitis, and eosinophilic…
2018 FOD/OAA International Metabolic Conference Families dealing with fatty oxidation disorders, methymalonic acidemia, and organic acidemias will feel right at home at this event. At this conference, patient families will…
"Learn, Network, and Bond!" This event will be an opportunity for Sotos syndrome patients and families to come together for a weekend of support, community building, and education. Additionally,…
The 2019 NUCDF Annual Family Conference This year's conference will be a unique opportunity for researchers, patients, families, and medical experts to come together and spread support and knowledge about…
"Advance the Dream" This conference will be a chance for PKU patients and their families to learn the latest about PKU research and treatment from disease experts. The event will…
The 13th Annual Arthrogryposis Multiplex Congenita Conference This conference will be a chance for families affected by AMC to converge and share stories and support. In addition medical professionals and experts…
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…
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…
© Copyright 2024 Patient Worthy
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
