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June 2019
Association for X and Y Variations’ AXYS Family Conference
The 2019 AXYS Family Conference Atlanta, Georgia Are you or one of your family members affected by Trisomy X or other X and Y chromosome variations? Then this conference is for you. Don't miss this opportunity to hear from world-renowned researchers and experts about X and Y chromosome conditions like Trisomy X. Learn practical information about a variety of different conditions and the effects they can have at various ages. For registration info, click here.
Find out more »Cure SMA’s Annual SMA Conference
The 2019 Annual SMA Conference Anaheim, California Cure SMA's annual conference is the largest conference in world focused on spinal muscular atrophy. The event includes and event for both patient families and researchers, allowing for a unique environment of collaboration and comradery. Don't miss this opportunity to learn the latest about spinal muscular atrophy, build community, and share with each other. For registration information, click here.
Find out more »July 2019
The Glut1 Deficiency Foundation’s 8th Biennial Conference
The 2019 Biennial Conference The Glut1 Deficiency Foundation's biennial conference is an event that you won't want to miss. The conference will feature a variety of sessions related to various topics related to Glut1 deficiency. The 2019 conference will also include special sessions dedicated to the adult patient experience of Glut1 deficiency. Registration for Glut1 deficiency patients is FREE. For more registration information, click here.
Find out more »Metairie, LA Live Event: CIDP Patient Speaker Program
Speakers: William Blouin, ARNP Robert Romine To register for this live event, click here. 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 and is promoted through the 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.
Find out more »Tampa, FL Live Event: CIDP Patient Speaker Program
Speakers: Carla Duff, ANP Dani Ball To register for this live event, click here. 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 and is promoted through the 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.
Find out more »The MAGIC Foundation’s 25th Annual Convention
The MAGIC Foundation's 25th Annual Convention 2019 This 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 patients of all ages. Disorders to be covered at the event include growth hormone deficiency, congenital adrenal hyperplasia, Russell-Silver syndrome, precocious puberty, hypophosphatasia, panhypopituitarism, McCune-Albright syndrome, and optic nerve hypoplasia. More information about this event will be coming soon. Click here to learn more.
Find out more »ISMRD The International Advocate for Glycoprotein Storage Diseases’ 6th International Conference on Glycoproteinoses
The 6th International Conference of Glycoproteinoses "Translating Scientific Discovery Into Therapies" This international event will include researchers, patients, and caregivers that are involved in the international glycoprotein disease communities. This event will be a tremendous opportunity for the sharing of both knowledge and inspiration that will help improve the lives of people affected by glycoprotein diseases. Registration for this conference is free for patients. Registration pricing info for other attendees can be found here.
Find out more »August 2019
KIF1A.ORG’s KIF1A Family & Scientific Conference
The KIF1A Family & Scientific Conference KIF1A.ORG is putting together its very first KIF1A focused family and science conference. This conference will be an unprecedented opportunity for KIF1A associated neurological disorder patients from around the world to come together and build community, as well as learn about the latest developments in KIF1A research and treatment. KIF1A.ORG is currently running a fundraiser intended to help patient families travel to the conference. If you are interested in contributing, click here.
Find out more »Sarasota, FL Live Event: CIDP Patient Speaker Program
Speakers: Carla Duff, ANP Dani Ball To register for this live event, click here. 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 and is promoted through the 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.
Find out more »September 2019
Webinar: CIDP Patient Speaker Program
Speakers: Estelle Helms Carla Duff, ARNP, CPNP-PC, MSN, CCRP, IgCN 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 the 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.
Find out more »Everylife Foundation for Rare Diseases 11th Annual Scientific Workshop
The 11th Annual Scientific Workshop Science of Small Trials in the Age of Biological Plausability The 11th Annual Scientific Workshop will be a convergence of key regulatory officials, researchers, and rare disease experts. This year will focus on the design of clinical trials for rare disease and discuss alternative strategies for designing effective trials that take into account the characteristics of rare diseases, such as the limited size of patient populations. Registration for this event is free and begins on…
Find out more »Dupuytren Research Group’s Dupuytren Disease Seminar
The Dupuytren Disease Seminar September 8th, 2019 Featuring Dr. Charles Eaton, Founder of the Dupuytren Research Group Dr. Eaton will be giving a presentation about to Dupuytren's contracture and other related diseases. He will also discuss the progress of research conducted by the organization related to blood tests. This free event is relevant to all Dupuytren's patients and their families and is completely free. To register, click here.
Find out more »Global Genes’ RARE Patient Advocacy Summit
The Global Genes RARE Patient Advocacy Summit This conference will be a convergence of a variety of rare disease stakeholders, such as rare disease patients, world renowned experts, and caregivers. Attendees will leave this event with the skills necessary to be effective rare disease advocates as well as the latest knowledge about the latest in rare disease research and treatment. To register for this event, click here.
Find out more »Staten Island, NY Live Event: CIDP Patient Speaker Program
Speakers: Lisa Mandolfo, MSN Robert Romine To register for this live event, click here. 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 and is promoted through the 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.
Find out more »Webinar: CIDP Patient Speaker Program
Speakers: Stephanie Stencil Laura Rohe, RN, BSN 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 the 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.
Find out more »The Chinese Organization for Rare Disorders’ 8th China Rare Disease Summit
The Eighth China Rare Disease Summit The China Rare Disease Summit is the largest rare disease focused event held in China. A variety of rare disease stakeholders from across the country will converge for an event of research presentations and collaboration. For registration information, click here.
Find out more »Cambridge Rare Disease Network’s RARESummit 2019
RARESummit 2019 Patients as Partners RARESummit 2019 is a rare disease conference unlike any other. The emphasis of this event is patient-centricity and partnership in the process of rare disease research and treatment advances. The reality is that patients must come first for these goals to be reached. It's time to transform patient involvement in the process. To register for this event, click here.
Find out more »Kisaco Research’s Rare Disease Diagnostics Summit
Rare Disease Diagnostics Summit "Reducing the Diagnostic Odyssey to Improve Patient Outcomes" Boston, Massachusetts The diagnostic component of genetic rare diseases must be addressed. More than 350 million people are living with a rare disease. On average it takes 7 different consultations before an initial referral to a clinical geneticist and a minimum of 5 years to completely diagnose a patient, with 70-90% of cases going undiagnosed. With roughly 7,000 known rare diseases, 80% have a genetic crisis. The numbers…
Find out more »Tampa, FL Live Event: CIDP Patient Speaker Program
Speakers: Jerrica Farias, MS Dani Ball To register for this live event, click here. 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 and is promoted through the 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.
Find out more »October 2019
Webinar: CIDP Patient Speaker Program
Speakers: Estelle Helms Carla Duff, ANP 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 the 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.
Find out more »The Foundation for Sarcoidosis Research’s Toronto Patient Education Conference
The 2019 Toronto Patient Education Conference Are you a sarcoidosis patient? Well don’t miss this important patient event. At this conference, sarcoidosis patients and their families will have the opportunity to learn the latest about clinical care and treatment options for sarcoidosis as well as hear about the latest research initiatives supported by the FSR. Registration for this event will open on July 1st, 2019. Check this link for the latest updates for this event as they are posted.
Find out more »Center for Chronic Illness’s Living Mindfully With Chronic Illness Support Group
Web-based Living Mindfully With Chronic Illness Support Group 2nd Tuesday of each month This is a support group for rare disease patients dealing with chronic illness who are seeking to live with self-compassion and mindfulness. Featuring Bartja Wachtel, MSW, LICSW, MHP, CMHS To sign up for this event, click here.
Find out more »Center for Chronic Illness’s Rare Chronic Illness Support Group
Web-based Rare Chronic Illness Support Group 2nd Thursday of each month This is a peer support group for patients living with chronic, rare diseases. Featuring Cara Oppegard, MSW intern To sign up for this event, click here.
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