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October 2019
Center for Chronic Illness’s Rare Chronic Illness Support Group
Rare Chronic Illness Support Group 2nd Friday of each month This is a peer support group for patients living with chronic, rare diseases. Featuring Carrie Pope, MSW, LICSW To sign up for this event, click here.
Find out more »White Plains, NY Live Event: Primary Immunodeficiency Patient Speaker Program
Speakers: Darlene Madore, MSN, APRN, CPNP-PC, BSN, RN Annette Gregory To register for this live event, click here. For information on PI 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: Lorry Callaghan Robin Yawn, 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 »Center for Chronic Illness’s Living With Chronic Illness Support Group
Web-based Living With Chronic Illness Support Group 4th Monday of each month This is a peer support group for patients living with chronic, rare diseases. Featuring Alicia Sloan, MSW, LICSW, MPH To sign up for this event, click here.
Find out more »November 2019
Webinar: CIDP Patient Speaker Program
Speakers: Christal Dolan 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 »Center of Chronic Illness’s Rare Chronic Illness Support Group
Rare Chronic Illness Support Group 2nd Friday of each month This is a peer support group for patients living with chronic, rare diseases. Featuring Carrie Pope, MSW, LICSW To sign up for this event, click here.
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 »The International Pain Foundation’s All in 1 iPain Summit
$850
The All in 1 iPain Summit Los Angeles, CA #GetOnTrack This conference is dedicated to patients that are dealing with chronic, long term pain. This event will inform attendees about how to successfully manage chronic pain and live fulfilled and active lives. For registration info, 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.
Find out more »Oakland Park, FL Live Event: CIDP Patient Speaker Program
Speakers:Carla Duff, ARNP 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 »Webinar: CIDP Patient Speaker Program
Speakers: Stephanie Stencil William Blouin, ARNP 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 »December 2019
Webinar: CIDP Patient Speaker Program
Speakers: Danielle Ball Lisa Mandolfo, MSN 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 »Webinar: CIDP Patient Speaker Program
Speakers: Elizabeth Thirtyacre 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 »March 2020
The Everylife Foundation for Rare Diseases and Global Genes’ RARE on the Road Rare Disease Leadership Tour
RARE on the Road: a Rare Disease Leadership Tour May 30th, 2020 Raleigh, NC The Rare Disease Leadership Tour is designed to give insights and education to rare disease advocates, patients, and caregivers. Learn how to activate your local rare disease community. The tour is a unique opportunity to connect with other rare disease advocates and patients, discover ways to tell your story as someone affected by rare disease, and learn how you can help save lives and have a…
Find out more »April 2020
The Everylife Foundation for Rare Diseases and Global Genes’ RARE on the Road Rare Disease Leadership Tour
RARE on the Road: a Rare Disease Leadership Tour April 17th, 2020 Burlingame, CA The Rare Disease Leadership Tour is designed to give insights and education to rare disease advocates, patients, and caregivers. Learn how to activate your local rare disease community. The tour is a unique opportunity to connect with other rare disease advocates and patients, discover ways to tell your story as someone affected by rare disease, and learn how you can help save lives and have a…
Find out more »May 2020
Alexion Pharmaceuticals’ Stand with HPP Live Webinar
Stand With HPP Live Webinar May 6th, 2020 at 6pm ET Listen to a physician and a patient or caregiver discuss topics about hypophosphatasia (HPP). Ask questions & gather information to discuss with your doctor. To register for this webinar, click here. Acknowledgment: This event post is sponsored by Alexion Pharmaceuticals 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 »Superficial Siderosis Research Alliance’s Running Wild for a Cure 5K
$35
Running Wild for a Cure 5K Run-Walk Sunday, May 17th, 2020 This goal of this race is to raise funds for the Superficial Siderosis Research Alliance, a nonprofit organization dedicated to spreading awareness and funding research for superficial siderosis, a very rare neurodegenerative illness. For registration and more info about the event, click here.
Find out more »Alexion Pharmaceuticals’ Stand with HPP Live Webinar
Stand With HPP Live Webinar May 28th, 2020 at 6pm ET Listen to a physician and a patient or caregiver discuss topics about hypophosphatasia (HPP). Ask questions & gather information to discuss with your doctor. To register for this webinar, click here. Acknowledgment: This event post is sponsored by Alexion Pharmaceuticals 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 Everylife Foundation for Rare Diseases and Global Genes’ RARE on the Road Rare Disease Leadership Tour
RARE on the Road: a Rare Disease Leadership Tour March 28th, 2020 Minneapolis, MN The Rare Disease Leadership Tour is designed to give insights and education to rare disease advocates, patients, and caregivers. Learn how to activate your local rare disease community. The tour is a unique opportunity to connect with other rare disease advocates and patients, discover ways to tell your story as someone affected by rare disease, and learn how you can help save lives and have a…
Find out more »June 2020
Alexion Pharmaceuticals’ Stand with HPP Live Webinar
Stand With HPP Live Webinar June 9th, 2020 at 6pm ET Listen to a physician and a patient or caregiver discuss topics about hypophosphatasia (HPP). Ask questions & gather information to discuss with your doctor. To register for this webinar, click here. Acknowledgment: This event post is sponsored by Alexion Pharmaceuticals 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 »Global Genes’ RARE Drug Development Symposium
The RARE Drug Development Symposium June 11-12, 2020 NOTE: Due to the ongoing coronavirus/COVID-19 pandemic, this event is now virtual. The RARE Drug Development Symposium is intended as an event geared towards inspiring and educating rare disease advocates. Advocates, stakeholders, and patients are all encouraged to attend the online event. It will focus on the process of developing drugs for rare diseases and the role that advocates can play in the process. To register for this event, click here.
Find out more »Everylife Foundation and Global Genes’ RARE on the Road Virtual Rare Disease Leadership Tour
$25
RARE on the Road: a Virtual Rare Disease Leadership Tour June 23rd-24th, 2020 The Virtual Rare Disease Leadership Tour is designed to give insights and education to rare disease advocates, patients, and caregivers. Learn how to activate your local rare disease community. The tour is a unique opportunity to connect with other rare disease advocates and patients, discover ways to tell your story as someone affected by rare disease, and learn how you can help save lives and have a…
Find out more »The Everylife Foundation for Rare Diseases and Global Genes’ RARE on the Road Rare Disease Leadership Tour
RARE on the Road: a Rare Disease Leadership Tour June 27th, 2020 New Orleans, LA The Rare Disease Leadership Tour is designed to give insights and education to rare disease advocates, patients, and caregivers. Learn how to activate your local rare disease community. The tour is a unique opportunity to connect with other rare disease advocates and patients, discover ways to tell your story as someone affected by rare disease, and learn how you can help save lives and have…
Find out more »July 2020
National Organization for Rare Disorders’ Living Rare, Living Stronger Patient and Family Forum
$125
The 2020 Living Rare, Living Stronger NORD Patient and Family Forum July 18-20, 2020 Cleveland, OH This yearly conference for patients, their families, and researchers features a comprehensive content program that will leave patients with the practical tips they need to live with their rare disease and provide caregivers and researchers with the latest information to incorporate into their practice. Four distinct tracts at the event will be geared towards recently diagnosed rare disease patients, caregivers, long term patients, and…
Find out more »August 2020
Boehringer Ingelheim’s More Than Scleroderma Educational Webinar
More Than Scleroderma: A Live Educational Event August 13, 2020 at 2:00 PM ET Join us for a webinar about scleroderma Because scleroderma is so rare, it can be hard to find understandable or comprehensive information, and difficult to know what it all means. For example, did you know that most people with scleroderma will develop some fibrosis in their lungs? Featuring Kristen Pasewald, RN, NP (Speaker) and Craig Sahr, RN, BSN (Host) At this free webinar, you will: Learn…
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