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April 2019
Charlotte, NC Live Event: CIDP Patient Speaker Program
Speakers: Lisa M. Mandolfo, RN Elizabeth Thirtyacre 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 »May 2019
The Everylife Foundation and Global Genes’ RARE on the Road: Birmingham, AL
RARE on the Road RARE on the Road is a Rare Disease Leadership Tour that will be making several stops throughout the US. The goal of this event is to bring critical education content to rare disease patients, advocates, and caregivers in order to help patients and foster community. To register for this event, click here. To learn more about RARE on the Road, click here.
Find out more »Leawood, KS Live Event: CIDP Patient Speaker Program
Speakers: Laura Rohe RN, BSN, AE-C Elizabeth Thirtyacre 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 »Jamal’s Helping Hands’ Rare Disease Support Group
Rare Disease Support Group May 6th, 2019 Featuring guest speaker Lemzel Johnson Living with a rare disease can be a daunting and isolating experience. Why not seek out other people that share your experience as a rare disease patient? This rare disease support group is the perfect opportunity to do just that. You are not alone. You do not have to face your diagnosis alone. The sooner you can find support, the better. This event is completely free and open…
Find out more »San Antonio, TX 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 »Rare Alabama’s Rare Disease Advocacy Day
Rare Disease Advocacy Day May 8th, 2019 Are you a patient from Alabama? Well this is your opportunity to speak with lawmakers directly about your concerns and what you think they should do for the rare disease patient community. Don't know what to say? No worries. The day will start with advocacy training so that you will be able to communicate with your representatives as effectively as possible. Registration is FREE. Lunch provided.
Find out more »Webinar: CIDP Patient Speaker Program
Speakers: Carla Duff ARNP, CPNP-PC, MSN Estelle Helms 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 »Sanford Research and the Coordination of Rare Diseases at Sanford’s 9th Annual Great Plains Rare Diseases Summit
The 9th Annual Great Plains Rare Diseases Summit This event is geared towards the rare disease patient community that is situated in the great plains region. The summit will be a unique opportunity for participants to learn about the latest rare disease research, understand their treatment options, build community and equip themselves with the knowledge they need to ensure that they are getting the best care available. Registration for this event is FREE. Note: each full day requires a separate…
Find out more »The LGS Foundation’s 6th International Conference
$250
The Sixth International Conference on LGS (Lennox-Gastaut syndrome) The LGS Foundation's annual international conference is a three day event that is ideally suited for LGS patients and their families, as well as LGS scientific experts and medical professionals. This event will feature informative panels and presentations on various aspects of LGS as well as opportunities to build community and fellowship with other patients and families. For registration information, click here.
Find out more »Asheville, NC Live Event: CIDP Patient Speaker Program
Speakers: Danielle Ball Laura Rohe RN, BSN, AE-C 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 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 »Columbia, MD Live Event: CIDP Patient Speaker Program
Speakers: Carla Duff, ANP Elizabeth Thirtyacre 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 ARNP, CPNP-PC, MSN, CCRP, IgCN Appolos Laurore 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 »Dallas TX Live Event: CIDP Patient Speaker Program
Speakers: Carla Duff, ANP Appolos Laurore 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 »June 2019
The International Waldenstrom Macroglobulinemia Foundation’s Educational Forum
$275
2019 IWMF Educational Forum Patients and caregivers will have the chance to learn from Waldenstrom's macroglobulinemia experts about the latest in research, treatment, and best practices for this disease. For registration info, click here.
Find out more »King of Prussia, PA Live Event: CIDP Patient Speaker Program
Speakers: Carla Duff, ANP Appolos Laurore 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 »Hartford, CT Live Event: CIDP Patient Speaker Program
Speakers: William Blouin MSN, ARNP, CPNP Danielle 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 »Webinar: CIDP Patient Speaker Program
Speakers: Estelle Helms Carla Mendoza LVN, 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 APS Type 1 Foundation’s International APS Type 1 Symposium
$190
The 3rd International APS Type 1 Symposium National Harbor, Maryland in partnership with the Immune Deficiency Foundation's IDF National Conference. Are you a autoimmune polyendocrine syndrome (APS) type 1 patient? Well don’t miss this important patient event. At this conference, APS type 1 patients and their families will have the opportunity to learn the latest about clinical care and treatment options for APS type 1 as well as hear about the latest research initiatives. For registration information, click here.
Find out more »The Spastic Paraplegia Foundation’s 2019 Spastic Paraplegia Annual Conference
$250
The 2019 Spastic Paraplegia Annual Conference Patients, their families, medical professionals, and caregivers are invited to attend this conference. Participants will have the opportunity to network with one another, build community, and learn the latest research and treatment news for hereditary spastic paraparesis and primary lateral sclerosis. For registration information, click here.
Find out more »The National Organization for Rare Disorders’ Living Rare, Living Stronger NORD Patient & Family Forum
$125
The 2019 Living Rare, Living Stronger NORD Patient & Family Forum featuring the Rare Impact Awards 2019 This rare disease patient forum brings together health professionals, physicians, patients, and medical researchers to learn from the latest scientific findings and form community together. This event will also include the Rare Impact Awards, an event that is meant to celebrate individuals that have made considerable contributions to the well-being and quality of life for rare disease patients and their caregivers. For registration…
Find out more »The Oley Foundation’s Oley Foundation and University of Illinois at Chicago Conference
The 2019 Oley Foundation and University of Illinois at Chicago Annual Conference The Essentials of Home Parenteral and Enteral Nutrition: What Consumers and Clinicians Need to Know Are you a rare disease patient that requires tube feeding or intravenous nutrition? Well this is a great event for you to attend. Learn the basics about conducting tube feeding or intravenous nutrition in the home setting. Are you a clinician? Then you shouldn't miss this event either. Learn from colleagues and experts…
Find out more »The Alpha-1 Foundation’s Alpha-1 National Conference
$180
The 28th Annual Alpha-1 National Conference Orlando, Florida Are you an alpha-1 antitrypsin deficiency patient? Well don’t miss this important patient event. At this conference, alpha-1 antitrypsin deficiency patients and their families will have the opportunity to learn the latest about clinical care and treatment options for alpha-1 antitrypsin deficiency as well as hear about the latest research initiatives. For registration information, click here.
Find out more »PURA Syndrome Foundation’s Annual PURA Syndrome Conference
$100
4th Annual PURA Syndrome Conference The conference will be an opportunity for patient families and medical experts to meet and learn about the latest in PURA syndrome research. Additionally, families will be able to consult with health professionals, build communities, and exchange ideas. For registration information, click here.
Find out more »The National Organization for Rare Disorders 2019 Patient & Family Forum
The 2019 Living Rare, Living Stronger NORD Patient & Family Forum Featuring The 2019 Rare Impact Awards As published on NORD's website, the 2019 Living Rare, Living Stronger NORD Patient & Family Forum will be held on June 21-23 of this year! It will bring the rare community together with physicians, medical students, and allied health professionals for a program of learning, sharing and connection – in an atmosphere of support and understanding – plus fun! The Rare Impact Awards…
Find out more »The United Mitochondrial Disease Foundation’s Mitochondrial Medicine 2019
$115
Mitochondrial Medicine 2019 Mitochondrial Medicine 2019 is the annual symposium hosted by the United Mitochondrial Disease Foundation, an event that has been widely regarded by patient families, researchers, and physicians as the premiere annual event dedicated to mitochondrial disease research and treatment. While this event is focused on scientific research, patients and their families are encouraged to attend to build community with each other and learn about the latest developments. For registration information, click here.
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