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October 2022

World Alliance of Pituitary Organizations’ Webinar: Protocol for Acromegaly Patient Care

October 7 @ 5:00 pm - 6:00 pm

Online Webinar: Protocol for Acromegaly Patient Care With Deanna Badiuk, Speaker October 7, 2022 After being diagnosed in 2008 with Acromegaly and realizing there was no support group in Western Canada, I decided to start a support group for acromegaly patients. The support group is based out of Vancouver, British Columbia, Canada and services most of Western Canada and maintains close relations with organizations within Canada and across North America and Europe. My focus is to support people with acromegaly…

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HCU Network America’s Classical HCU Parent-Caregiver Online Meetup

October 8 @ 10:00 am - 11:00 am

Classical HCU Parent-Caregiver Online Meetup October 8, 2022 at 10 AM Online meet-ups are an opportunity to connect parents & caregivers impacted by classical homocystinuria to with each other. Whether your child is 5 months old or 25 years old, parents, grandparents, and caregivers of those with HCU need support! Come join us for networking, tips, tricks, and conversation. To sign up, click here.

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Glut1 Deficiency Foundation’s Virtual Community Gatherings: Comunidad Hispana

October 8 @ 11:00 am - 12:00 pm

Fall Glut1 Gatherings on Zoom: Comunidad Hispana October 8, 2022 Our Zoom program provides opportunities for members of our community to meet up with others no matter where we live! These gatherings will provide us opportunities to meet, share, learn, and support one another. Our quarterly meetings for parents are offered in both English and Spanish, and they include research updates, educational content, guest speakers, and social time at each gathering. Pre-registrations will still be required, and as an extra…

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HCU Network America’s Classical HCU Virtual Meet-Up

October 9 @ 2:00 pm - 3:00 pm

Classical HCU Virtual Meet-Up October 9, 2022 Meetups are an opportunity to connect patients and caregivers impacted by Classical Homocystinuria to one another virtually. About this event Struggling with the diet and formula? Feeling like you are in a food rut, don’t like your formula, or you are having trouble getting it covered? Having health issues, you aren’t sure are HCU related, or just part of being an adult? Come join us for our Classical HCU Community Meetup. Click here…

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The Center for Chronic Illness: Parenting Chronic Illness Webinar

October 10 @ 4:00 pm - 5:00 pm

Parenting Chronic Illness Webinar A web-based peer support group for parents of children living with health challenges led by Natalie Hopkins, MSW 2nd Monday of each month from 4-5pm This program is currently meeting virtually. To sign up, visit www.supportgroupscentral.com/CCI

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The PBCers Organization’s 2022 PBC Conference

October 13 @ 5:00 pm - October 15 @ 6:00 pm
1115 Central Ave
Hot Springs, AR 71901 United States
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$125

2022 PBC Conference October 13-15, 2022 Durham, NC Don't miss this year's PBC Conference, an event geared towards education, support, and research related to primary biliary cholangitis and the patient community. For more information about the event, click here. You can also submit any more specific questions you have about the in-person conference in an email to PBCconference@pbcers.org To register, click here.

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The Center for Chronic Illness WA State Rare Chronic Illness Support Group

October 14 @ 1:30 pm - 2:30 pm

WA State Rare Chronic Illness Support Group A supportive group for WA state residents living with rare health challenges facilitated by Carrie Pope, MSW, LICSW 2nd Friday of each month, 1:30-2:30pm PST This program is currently meeting virtually. Visit www.thecenterforchronicillness.org/groups to sign up for free!

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The MDS Foundation’s MDS Patient and Family/Caregiver Forum

October 15 @ 9:00 am - 1:00 pm
The Inn at Opryland, A Gaylord Hotel, 2401 Music Valley Drive
Nashville, TN 37214 United States
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MDS Patient & Family/Caregiver Forum October 15, 2022 Presenters: Sanjay Mohan, MD, Vanderbilt University Medical Center Ashley Moncrief, RN, BSN, Vanderbilt University Medical Center Whether you are a newly diagnosed patient, a long-term survivor, or a caregiver this event will give you the opportunity to learn from experts about treatment therapies and strategies for patients and caregivers LIVING with MDS. To register for free, click here.

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Glut1 Deficiency Foundation’s Virtual Community Gatherings: Adult Overcomers

October 16 @ 1:00 pm - 2:00 pm

Fall Glut1 Gatherings on Zoom: Adult Overcomers October 16, 2022 Our Zoom program provides opportunities for members of our community to meet up with others no matter where we live! These gatherings will provide us opportunities to meet, share, learn, and support one another. Our quarterly meetings for parents are offered in both English and Spanish, and they include research updates, educational content, guest speakers, and social time at each gathering. Pre-registrations will still be required, and as an extra…

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National Organization for Rare Disorders’ Rare Diseases + Orphan Products Breakthrough Summit

October 17 - October 18
1115 Central Ave
Hot Springs, AR 71901 United States
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The Rare Diseases + Orphan Products Breakthrough Summit October 17-18, 2022 This year, NORD is thrilled to welcome the rare family and all community stakeholders back together in-person to Washington, DC for the 2022 Rare Diseases and Orphan Products Breakthrough Summit. Join your fellow rare disease leaders from patient advocacy groups, government, industry, and academia for exclusive access to fresh insights, compelling connections, and expert resources. Don’t miss out on #NORDSummit – registration is OPEN now! To get registered, click…

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World Alliance of Pituitary Organizations’ Webinar: Fighting Against the Global Issue of Substandard and Falsified (SF) Medical Products

October 20 @ 3:00 pm - 4:00 pm

Online Webinar: Fighting Against the Global Issue of Substandard (SF) and Falsified Medical Products With Dr. Bahijja Raimi-Abraham October 20, 2022 Dr Bahijja Raimi-Abraham is a pharmacist, Lecturer in Pharmaceutics at King’s College London, Founder and Academic Lead of King’s College London Fight the Fakes. She leads her research group 'The Raimi-Abraham Group' which focuses on solving pharmaceutical challenges in infectious diseases with a particular interest in malaria, tuberculosis, and latent and asymptomatic infections. Dr Raimi-Abraham is the founder and…

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Danny’s Dose’s Family Education Event: Baton Rouge, LA

October 22 @ 10:15 am - 1:00 pm
Red Stick Social, 1503 Government St
Baton Rouge, LA 70802 United States
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Danny's Dose Family Education Event: Baton Rouge, LA October 22, 2022 FOR ADULTS and FAMILIES LIVING WITH RARE DISEASE OR CHRONIC ILLNESS REQUIRING SPECIALIZED EMERGENCY CARE and/or MEDICATIONS! 10:00 – 10:15: Registration 10:15 – 12:15: Adult  - Education & Bowling Children – EMS Education / Bowling / Outdoor Activities 12:15 -- 1:00: Lunch 1:00: End & Distribute Zoo Tickets***  (If funds available) Vendors will be available throughout the afternoon from 11:00 to 4:30 Click here to sign up.

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Glut1 Deficiency Foundation’s Virtual Community Gatherings: Parents

October 22 @ 11:00 am - 12:00 pm

Fall Glut1 Gatherings on Zoom: Parents October 22, 2022 Our Zoom program provides opportunities for members of our comGlmunity to meet up with others no matter where we live! These gatherings will provide us opportunities to meet, share, learn, and support one another. Our quarterly meetings for parents are offered in both English and Spanish, and they include research updates, educational content, guest speakers, and social time at each gathering. Pre-registrations will still be required, and as an extra layer…

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Glut1 Deficiency Foundation’s Virtual Community Gatherings: Child Glut1 Pals

October 22 @ 1:00 pm - 2:00 pm

Fall Glut1 Gatherings on Zoom: Child Glut1 Pals October 22, 2022 Our Zoom program provides opportunities for members of our community to meet up with others no matter where we live! These gatherings will provide us opportunities to meet, share, learn, and support one another. Our quarterly meetings for parents are offered in both English and Spanish, and they include research updates, educational content, guest speakers, and social time at each gathering. Pre-registrations will still be required, and as an…

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HCU Network America’s Cobalamin Disorders Virtual Meet-Up

October 23 @ 10:00 am - 11:00 am

Cobalamin Disorders with Homocystinuria Meetup October 23, 2022 Online meet-ups are an opportunity to connect with patients and caregivers impacted by cobalamin disorders with elevations of homocysteine to one another virtually. If you are a medical professional or industry representative looking to attend, please contact HCU Network America to seek advanced approval. To sign up, click here.

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November 2022

The Center for Chronic Illness Web-Based Rare Chronic Illness Support Group

November 1 @ 7:00 pm - 8:00 pm

Web-Based Rare Chronic Illness Support Group A peer support group for those living with rare health challenges led by Kerry Heckman, MSW, LICSW 1st Tuesday of each month, 4-5pm PST / 7-8pm EST To sign up for free, visit www.supportgroupscentral.com/CCI

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The MDS Foundation’s MDS Patient and Family/Caregiver Forum

November 5 @ 9:00 am - 2:00 pm
Aloft Hotel Dallas Love Field, 2333 W Mockingbird Lane
Dallas, TX 75235 United States
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MDS Patient & Family/Caregiver Forum November 5, 2022 Presenters: Stephen Chung, MD Yazan Madanat, MD Madhuri Vusirikala, MD Amber Thomassen, AGPCNP-BC, AOCNP Whether you are a newly diagnosed patient, a long-term survivor, or a caregiver this event will give you the opportunity to learn from experts about treatment therapies and strategies for patients and caregivers LIVING with MDS. To register for free, click here.

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MS Views and News’ 13th Annual MS Symposium – A Day of Virtual Learning

November 5 @ 10:00 am - 4:00 pm

The 13th Annual MS Symposium: A Day of Virtual Learning November 5, 2022 The Annual MS Symposium is a day of learning, making connections, and staying up to date for people affected by Multiple Sclerosis. Join the largest MS educational event of the year live online To learn more and get signed up, click here.

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The Center for Chronic Illness WA State Rare Chronic Illness Support Group

November 11 @ 1:30 pm - 2:30 pm

WA State Rare Chronic Illness Support Group A supportive group for WA state residents living with rare health challenges facilitated by Carrie Pope, MSW, LICSW 2nd Friday of each month, 1:30-2:30pm PST This program is currently meeting virtually. Visit www.thecenterforchronicillness.org/groups to sign up for free!

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SynGAP Research Fund’s SynGAP Soiree: Sparks of Hope

November 12 @ 7:00 pm - 10:00 pm
Piedmont Driving Club, 1215 Piedmont Ave NE
Atlanta, GA 30309 United States
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$150

The SynGAP Research Fund Presents: SynGAP Soiree: Sparks of Hope November 12, 2022 We are thrilled to announce the SYNGAP SOIREE • SPARKS OF HOPE fundraising gala. This event will bring together groups and individuals interested in furthering the mission of SynGAP Research Fund (SRF) and will be an opportunity to educate the community about SYNGAP1, a rare neurological disorder. Please join us for a special evening featuring an auction, dining, and entertainment. To register for this event, click here.

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The Center for Chronic Illness: Parenting Chronic Illness Webinar

November 14 @ 4:00 pm - 5:00 pm

Parenting Chronic Illness Webinar A web-based peer support group for parents of children living with health challenges led by Natalie Hopkins, MSW 2nd Monday of each month from 4-5pm This program is currently meeting virtually. To sign up, visit www.supportgroupscentral.com/CCI

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HCU Network America’s Rare X HCU Data Collection Program Facebook Live Chat: Oral Health Survey Webinar

November 17 @ 1:00 pm - 2:00 pm

Rare X HCU Data Collection Program Facebook Live Chat: Oral Health Survey Webinar November 17, 2022 From short roots to crowding of teeth, patients with various types of homocystinuria experience a wide range of oral issues. While some of these dental issues are better documented, other aspects aren't. Come join two adults with classical HCU, Danae' and Brooklyn, along with parent of a little boy with Cobalamin G, Ashlee as we dive into their experiences managing the oral health issues…

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World Alliance of Pituitary Organizations’ Webinar: Labour And a Chronic Illness

November 17 @ 3:00 pm - 4:00 pm

Online Webinar: Labour And a Chronic Illness With Johan Beun, Speaker November 17, 2022 Johan served till 2009 as Ambassador for NICTIZ and was international advisor to various countries, ministries and organizations to support them in their processes around the design and implementation of the EPR (=electronic patient record), one of the instruments for better patient safety. He was an advisor for the innovation processes in the NHS-Wales. He cooperated with the board of Kaiser Permanente California, USA as one…

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The MDS Foundation’s MDS Patient and Family/Caregiver Forum

November 19 @ 9:30 am - 2:00 pm
Marriot Tucson University Park, 880 East Second St
Tucson, AZ 85719 United States
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MDS Patient & Family/Caregiver Forum November 19, 2022 Presenters: Jeffrey J. Pu, MD, PhD, The University of Arizona Cancer Center Laura M. F. McPheeters, FNP-C, The University of Arizona Cancer Center Whether you are a newly diagnosed patient, a long-term survivor, or a caregiver this event will give you the opportunity to learn from experts about treatment therapies and strategies for patients and caregivers LIVING with MDS. To register for free, click here.

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Cambridge Rare Disease Network’s RAREfest22

November 25 - November 26
Cambridge Guildhall, 1-6 Corn Exchange St
Cambridge, CB2 3QF United Kingdom
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The Cambridge Rare Disease Network presents RARE Fest 2022 Engage.Educate.Empower. November 25-26, 2022 WE’RE BACK IN PERSON FOR RAREFEST22!! For the experts and the curious of all ages. For everyone. For free! RAREfest22 is a public-facing, 2-day rare disease inspired festival with interactive exhibits, talks, film and art showcasing ground-breaking science, visionary technology and pioneering organisations, improving lives and bringing hope to those affected by rare conditions. To register, click here.

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