Speakers: Laura Rohe RN, BSN, AE-C Elizabeth Thirtyacre To register for this live event, click here. Important Safety Information: WARNING: Thrombosis (blood clots) can occur with immune globulin products, including Hizentra.…
Speakers: Elizabeth Thirtyacre Carla Duff ARNP, CPNP-PC, MSN To register for this live event, click here. Important Safety Information: WARNING: Thrombosis (blood clots) can occur with immune globulin products, including Hizentra.…
Speakers: Carla Duff ARNP, CPNP-PC, MSN Appolos Laurore To register for this live event, click here. Important Safety Information: WARNING: Thrombosis (blood clots) can occur with immune globulin products, including Hizentra.…
Speakers: Stephanie Stencil Laura Rohe RN, BSN, AE-C To register for this webinar, click here. To read more about Webinar Wednesdays, click here. Important Safety Information: WARNING: Thrombosis (blood clots) can occur with…
A rarely addressed subject that comes up in discussions about people with disabilities is the subject of romantic relationships, intimacy, and parenting. More than likely, a lot of day to…
The Birmingham Patient Education Conference This conference will be a valuable opportunity for sarcoidosis patients and their families to learn the latest in sarcoidosis clinical care and treatment options, as…
Speakers: Estelle Helms Carla Duff ARNP, CPNP-PC, MSN To register for this webinar, click here. To read more about Webinar Wednesdays, click here. Important Safety Information: WARNING: Thrombosis (blood clots) can occur with…
Speakers: Laura Rohe RN, BSN, AE-C Elizabeth Thirtyacre To register for this live event, click here. Important Safety Information: WARNING: Thrombosis (blood clots) can occur with immune globulin products, including Hizentra.…
A free MDS Patient & Family/Caregiver Forum, sponsored by The MDS Foundation Inc., will be held in Beverly Hills, California on February 2nd. When: Saturday, February 2nd, 2019 Where: Beverly…
The Annual MS Holiday Gala The Roanoke Valley MS Support Group invites anyone whose life has been affected by multiple sclerosis, including caregivers, family and dear friends to join us…
Newborn Screening Webinar/Conference Call Are you interested in learning more about newborn screenings for rare diseases? Then don't miss this educational webinar, which will focus on the importance of newborn…
Learning Conference Australia This conference will combine educational sessions geared both towards health professional and Ehlers-Danlos syndrome patients. The event will also be an opportunity for the patient community to…
This weekend Patient Worthy attended RAREfest, an event being held in the UK by the Cambridge Rare Disease Network to raise awareness and promote discussion around rare disease issues. The…
Learning Conference Australia This conference will combine educational sessions geared both towards health professional and Ehlers-Danlos syndrome patients. The event will also be an opportunity for the patient community to…
The Newborn Screening Saves Lives Act was originally introduced to facilitate the spreading of awareness and education related to newborn disease screenings. The screening of newborns has had a major…
The 23rd Annual Meeting and Education Day This event will feature scientific presentations pertaining to the study and treatment of brain tumors such as glioblastoma. This year will focus on…
The annual Global Genes Rare Patient Advocacy Summit is wonderful place for families affected by rare disease to come together and interact face to face with advocacy leaders in addition…
The 6th Annual International ECD Medical Symposium and Family Gathering This event will feature a scientific research symposium on 11/14 and 11/15, as well as a Erdheim-Chester disease family convergence…
Living with Aplastic Anemia, MDS, or PNH Patient Conference Join us and connect with patients, families, and caregivers who are living with aplastic anemia, PNH, MDS, and AML. Meet and hear top medical experts…
Are you interested in learning about the latest trends and drug development in the rare disease field? Then you should check out a special Journalist Team Presentation from Global Data…
RAREfest, an event organised by the Cambridge Rare Disease Network (CRDN), will bring together patients, scientists, researchers, clinicians, support groups, businesses, and the public, to engage and educate people about…
The Joint Global Neurofibromatosis Conference: Combining the 2018 Children's Tumor Foundation NF Conference, the 18th European Neurofibromatosis Meeting, and 2018 Schwannomatosis & NF2 State of the Art This event…
The 15th Biennial Symposium This event will be a scientific research program presenting findings relevant to Guillain-Barré syndrome and chronic inflammatory demyelinating polyneuropathy. Registration $300/$175/$110/$90 (Couples/Individual/Saturday/Friday) Rates will increase after…
2018 Regional Rare Neuro-Immune Disorders Symposium This event will feature presentations of scientific research that will discuss the latest in treatment, diagnostics, and more for neuro-immune disorders such as transverse…
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…
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