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October 2018
The Misophonia Association’s 2018 Misophonia Convention
$175
The 2018 Misophonia Association Convention As an event geared toward the misophonia patient community, it will feature speakers and educational sessions meant to inspire and empower. In addition, attendees will be able to learn the latest misophonia research and treatment information. Patient families will have the opportunity to share, connect, and learn together. Registration $75/$175/$275 (Child/individual/couple)
Find out more »The Thyroid Cancer Survivors’ Association’s Thyroid Cancer Survivor’s Conference
$40
The 21st International Thyroid Cancer Survivor's Conference This is an event for anyone affected by thyroid cancer, such as survivors, new patients, families, medical professionals, researchers, and caregivers. The conference will be a comprehensive learning experience featuring sessions about types of thyroid cancer, new treatment methods, management best practices, and more. Registration $40/50 (Early/regular) Early registration ends 9/19.
Find out more »The Histiocyte Society’s 2018 Annual Meeting
$700
The Histiocyte Society Annual Meeting 2018 This event will feature programming that will discuss the latest in research and treatment for histiocyte related diseases such as Langerhans cell histiocytosis. Registration Early bird (before 7/23) $100/$150/$275/$370/$550/$700 (Extra banquet ticket/EISD attendee single day/single day/family groups, residents, retirees, fellows/member/nonmember) Regular (before 9/19) $100/$175/$335/$450/$675/$825 Onsite $100/$200/$400/$530/$800/$950
Find out more »World Without GNE Myopathy’s Run For WWGM
Run for WWGM at the 2018 Airtel Delhi Half Marathon "Finding Therapies to Improve Lives" The Airtel Delhi Half Marathon is widely known as one of the biggest marathons anywhere and it is also popular platform for fundraising. Looking to run for a cause? All money raised will go towards research to help cure GNE myopathy. Help create a world where rare diseases like GNE myopathy can be treated and cured. Registration for the half-marathon closed on September 7th, 2018.…
Find out more »The Histiocytosis Association’s Histio Heroes 5K
Histio Heroes 5K 2018 This 5K is a run and walk event that is family friendly. Build your team to help fundraise for the Histiocytosis Association at this exciting event. Your contributions will help support the organization's mission of community support, spreading awareness, education, and supporting histiocytosis research. Every donation will make a difference.
Find out more »EyeForPharma’s Annual Patient Summit USA
The 15th Annual Patient Summit USA At this conference, representatives from the medical field are invited to converge to learn what it truly means to put patients first. If you feel that your company needs to do better at authentically engaging with patients, and you want to learn how to work with patients and not just for them, than this is the event for you. Registration Are you a rare disease patient? You could qualify to attend this event for…
Find out more »The Coffin-Siris Syndrome Foundation’s Conference 2018
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 network, share stories, build community, and just have fun with each other. Registration for this event is FREE.
Find out more »The Transverse Myelitis Association’s Regional Rare Neuro-Immune Disorders Symposium
$30
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 myelitis. The conference will also be an opportunity for the patient community to come together to learn, network, and support each other. Registration $30/$25 (individual/additional guests) Children can attend for free.
Find out more »November 2018
The International Lyme and Associated Diseases Society’s Annual Scientific Conference
The 2018 Annual Scientific Conference The 19th Annual Scientific Session: Tick-Borne Diseases and the Immune System This conference will consist of scientific research presentations on the subject of Lyme disease, babesiosis, and other tick-borne diseases. Be sure to check the conference announcement page in order to find logistical information, which should be posted soon.
Find out more »The GBS/CIDP Foundation International’s Symposium 2018
$175
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 8/15.
Find out more »The Children’s Tumor Foundation, European NF Group, and Association Neurofibromatoses Et Recklinghausen’s Joint Global NF Conference
250€
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 will combine scientific presentations, sessions for patients with all forms of neurofibromatosis, and more. Registration Early bird (until 7/31) 240€/250€/470€/650€ (Researchers and students/members and patients/participants/industry) Standard (8/1-11/1) 300€/275€/520€/650€ Onsite 340€/295€/570€/650€
Find out more »GlobalData’s Orphan Drugs: A Review of Key Development Opportunities Webinar
The Orphan Drugs: A Review of Key Development Opportunities Webinar Interested in learning the latest about orphan, rare disease drug development? Well this is your opportunity. The orphan drug field has been getting more crowded as of late and shows no signs of slowing down. This presentation will feature presentations from GlobalData's Journalist Team. This webinar will focus on drug development for transthyretin amyloidosis (TTR), mucopolysaccharidosis (MPS), and atypical hemolytic uremic syndrome (aHUS). Registration for this event is FREE.
Find out more »The Erdheim-Chester Disease Global Alliance’s Annual International Symposium and Family Gathering
$100
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 on 11/15 and 11/16. Registration $100/$200/$300 (Early/regular/late) Early bird: until 6/30 Regular: 7/1 - 9/30 Late: 10/1 - onsite Registration for the scientific symposium is also $300.
Find out more »The Society for Neuro-Oncology’s Annual Meeting and Education Day
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 specifics of clinical trials and the characteristics that maximize glioblastoma patient outcomes. Registration information should be available on the event site in May 2018.
Find out more »December 2018
The EveryLife Foundation for Rare Diseases’ Newborn Screening Webinar
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 screenings and discuss the upcoming renewal of the 2007 Newborn Screening Saves Lives Act. Speakers will include Debbie Jessup, who is Health Policy Advisor for Rep. Lucille Roybal-Allard, and Rebecca Abbott, who works at the Office of Government Affairs at March of Dimes. Registration for this event is FREE.
Find out more »January 2019
Buffalo, NY Live Event: CIDP Patient Speaker Program
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. Please see full safety and prescribing information here: http://bit.ly/HizentraptISI For information on CIDP Webinar Wednesdays with a 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…
Find out more »Webinar: CIDP Patient Speaker Program
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 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 Foundation for Sarcoidosis Research’s Birmingham Sarcoidosis Conference
$10
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 well as learn about the latest research initiatives from the FSR. Conference Registration: $10
Find out more »Sarasota, FL Live Event: CIDP Patient Speaker Program
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. 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…
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 »Naples, FL Live Event: CIDP Patient Speaker Program
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. 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…
Find out more »February 2019
Huntsville, AL Live Event: CIDP Patient Speaker Program
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. 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…
Find out more »Webinar: CIDP Patient Speaker Program
Speakers: Stephanie Stencil 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 Hereditary Neuropathy Foundation’s “Take A Look At This Heart” Film Screening
$15
The final film screening of "Take A Look At This Heart" This unique film looks at the rarely addressed subject of the intimate and romantic lives of people with disabilities. Don't miss this opportunity to hear from seventeen disabled people about their intimate lives. Tickets: $15 To purchase tickets for this screening, click here. Want to save $5 off on your ticket price? Use the promo code "patientworthy" before you pay.
Find out more »Webinar: CIDP Patient Speaker Program
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 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.
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