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February 2019
The North Carolina Society of Gastroenterology’s Annual Conference
$50
NCSG Annual Conference 2019 The NCSG's annual conference is an opportunity for gastrointestinal medical professionals who study diseases affecting the digestive tract, such as achalasia, gastroesophageal reflux, irritable bowel disease, and gastroparesis to learn more about the latest in treatment options and research. Registration: $50/$175/$300 (members/ non-member physicians/ other non-member health professionals)
Find out more »Webinar: CIDP Patient Speaker Program
Speakers: Elizabeth Thirtyacre 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 immune globulin products, including Hizentra. Please see full safety and prescribing information here: http://bit.ly/HizentraptISI Acknowledgment: This event post is sponsored by CSL Behring as a part of our Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant, vetted and valuable information to the rare community.
Find out more »Rare Disease Legislative Advocates’ Cocktail Reception and Rare Disease Documentary Screening
Cocktail Reception and Rare Disease Documentary Part of Rare Disease Week on Capitol Hill 2019 All of the events for Rare Disease Week are free to patients, advocates, and caregivers. This event will feature light appetizers, a free drink ticket for all registrants and a rare disease documentary screening. Click here to register for this event.
Find out more »Rare Disease Legislative Advocates’ Legislative Conference
Rare Disease Legislative Advocates' Legislative Conference Part of Rare Disease Week on Capitol Hill 2019 All of the events for Rare Disease Week are free to patients, advocates, and caregivers. This conference is ideal for rare disease patients, their families, caregivers, and other advocates who want to learn the latest about legislative initiatives that are relevant to the needs and concerns of the rare disease patient community. Click here to register for this event.
Find out more »Webinar: CIDP Patient Speaker Program
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 immune globulin products, including Hizentra. Please see full safety and prescribing information here: http://bit.ly/HizentraptISI Acknowledgment: This event post is sponsored by CSL Behring as a part of our Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant, vetted and valuable information to the rare community.
Find out more »The MAGIC Foundation’s Annual Conference for Adults With Endocrine Disorders
$150
The 13th Annual Conference for Adults with Endocrine Disorders The comprehensive educational program will be an opportunity for patients, their families, and caregivers to learn the latest information about a variety of endocrine disorders that affect adults. Disorders to be covered at the event include hypothalamic obesity, adrenal insufficiency, Cushing's syndrome, and adult growth hormone deficiency. Click here to check registration options.
Find out more »March 2019
The Foundation for Sarcoidosis Research’s Durham Patient Education Conference
$10
The Durham Patient Education Conference 2019 This conference will be an opportunity for sarcoidosis patients and their families to learn the latest about sarcoidosis clinical care, treatment approaches, and the latest research initiatives from the FSR. Don't miss this conference if you want to learn the latest information about sarcoidosis. Conference Registration: $10
Find out more »The Aplastic Anemia and MDS International Foundation’s What’s New in Aplastic Anemia and PNH? Webinar
What's New in Aplastic Anemia and PNH? Important Findings from ASH 2018 This online webinar with Dr. Bhumika Patel will discuss the latest aplastic anemia and PNH research presented at the American Society of Hematology's 2018 meeting. Register now to learn the latest about the implications of these findings. You can register for this event here.
Find out more »Webinar: CIDP Patient Speaker Program
Speakers: Elizabeth Thirtyacre 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 immune globulin products, including Hizentra. Please see full safety and prescribing information here: http://bit.ly/HizentraptISI Acknowledgment: This event post is sponsored by CSL Behring as a part of our Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant, vetted and valuable information to the rare community.
Find out more »The Myelodysplastic Syndromes Foundation’s Patient & Family/Caregiver Forum
The MDS Patient & Family/Caregiver Forum at Phoenix, Arizona Have you been affected by myelodysplastic syndromes (MDS)? Perhaps you have just been diagnosed or have been facing your disease for years. Either way, the this event is an excellent opportunity for myelodysplastic syndromes patients and their families to learn the latest in disease research, treatments, and management strategies from acclaimed disease experts. Don't miss this unique opportunity. The register for this event, click here.
Find out more »The Coalition for Hemophilia B’s 2019 Annual Symposium
The 2019 Annual Symposium The Coalition for Hemophilia B's annual symposium is the largest annual gathering specifically for hemophilia B patients and their families. Learn the latest in research and treatment from hemophilia B experts and build community with other patients and community members during this three day event. Registration for this event is FREE.
Find out more »The Aplastic Anemia and MDS International Foundation’s Pediatric Aplastic Anemia and PNH Webinar
Pediatric Aplastic Anemia and PNH This webinar will feature Dr. Kasiani Myers from The Cancer and Blood Diseases Institute discussing the causes, treatment, and diagnosis of PNH and aplastic anemia in children as well as the connection between these two medical conditions. Register for this online webinar here.
Find out more »The Acromegaly Community and Pituitary Society’s Joint Annual Conference
The 16th International Pituitary Congress and The 2019 National Acromegaly Conference This year, the Pituitary Society and the Acromegaly Community have, on the basis of shared interest and common goals, agreed to hold their respective conferences side by side. This dual conference will further increase the opportunities for medical experts, endocrinologists, patients, and caregivers to learn from one another and increase educational awareness. Acromegaly patients and treatment specialists should not miss this unique opportunity. Stay tuned to this link to…
Find out more »The Acromegaly Community’s National Acromegaly Conference
The 2019 National Acromegaly Conference This acromegaly event is the ideal opportunity for patients, physicians, caregivers, and families to come together to learn more about acromegaly and the latest research and treatment options related to this condition. Don't miss this opportunity to become part of the #acrofamily. This event will be held alongside the Pituitary Society Conference. Registration for this event is FREE.
Find out more »The Cystinosis Research Foundation’s Day of Hope Family Conference
The 2019 Cystinosis Research Foundation Day of Hope Family Conference This conference for cystinosis patients and their families is a unique opportunity for attendees to learn the latest in cystinosis research and other topics related to the disease. Hear directly from CRF funded researchers and build community with fellow cystinosis patients. Registration for the event is FREE.
Find out more »April 2019
The American College of Medical Genetics and Genomics’ Annual Clinical Genetics Meeting
The 2019 Annual Clinical Genetic Meeting "Shaping The Future of Genetics and Genomics" This meeting is an opportunity for the medical genetics community to learn about the latest research, clinical implementation, and therapies. This year's meeting will also feature a joint session with the Society for Inherited Metabolic Disorders (SIMD). The two groups only meet together every four years, so don't miss this unique opportunity for education, networking, and collaboration. For registration information and pricing, click here .
Find out more »Phoenix, AZ Live Event: CIDP Patient Speaker Program
Speakers: Laura Rohe, RN Dani Ball To register for this live event, click here. Important Safety Information: WARNING: Thrombosis (blood clots) can occur with immune globulin products, including Hizentra. Please see full safety and prescribing information here: http://bit.ly/HizentraptISI For information on CIDP Webinar Wednesdays with this PW collaborator, click here. And to register, click here. Acknowledgment: This event post is sponsored by CSL Behring as a part of our Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant,…
Find out more »Louisville, KY Live Event: CIDP Patient Speaker Program
Speakers: Laura Rohe, RN 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. Please see full safety and prescribing information here: http://bit.ly/HizentraptISI For information on CIDP Webinar Wednesdays with this PW collaborator, click here. And to register, click here. Acknowledgment: This event is post sponsored by CSL Behring as a part of our Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant,…
Find out more »Houston, TX Live Event: CIDP Patient Speaker Program
Speakers: Carla Mendoza, RN 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. Please see full safety and prescribing information here: http://bit.ly/HizentraptISI For information on CIDP Webinar Wednesdays with this PW collaborator, click here. And to register, click here. Acknowledgment: This event post is sponsored by CSL Behring as a part of our Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing…
Find out more »Clayton, MO Live Event: CIDP Patient Program
Speakers: Laura Rohe, RN 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. Please see full safety and prescribing information here: http://bit.ly/HizentraptISI For information on CIDP Webinar Wednesdays with this PW collaborator, click here. And to register, click here. Acknowledgment: This event post is sponsored by CSL Behring as a part of our Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant, vetted…
Find out more »The Foundation for Sarcoidosis Research’s Iowa City Patient Education Conference
$10
Iowa City Patient Education Conference 2019 Are you a sarcoidosis patient? Then don't miss this patient education conference. This event is for sarcoidosis patients and their families who are interested in learning more about the latest in sarcoidosis treatment and clinical care, as well as the latest research initiatives supported by the FSR. Registration for this event begins on February 4th, 2019. Check this link to find the latest updates on information for this event. Conference Registration: $10
Find out more »Minneapolis, MN Live Event: CIDP Patient Speaker Program
Speakers: Laura Rohe, RN 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. Please see full safety and prescribing information here: http://bit.ly/HizentraptISI For information on CIDP Webinar Wednesdays with this PW collaborator, click here. And to register, click here. Acknowledgment: This event post is sponsored by CSL Behring as a part of our Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant,…
Find out more »New Haven, CT Live Event: CIDP Patient Speaker Program
Speakers:William Blouin, ARNP 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. Please see full safety and prescribing information here: http://bit.ly/HizentraptISI For information on CIDP Webinar Wednesdays with this PW collaborator, click here. And to register, click here. Acknowledgment: This event post is sponsored by CSL Behring as a part of our Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant, vetted and…
Find out more »Webinar: CIDP Patient Speaker Program
Speakers: Lisa Mandolfo MSN, RN Stephanie Stencil To register for this webinar, click here. To read more about Webinar Wednesdays, click here. Acknowledgment: This event post is sponsored by CSL Behring and is promoted through Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant, vetted and valuable information to the rare disease community.
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