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September 2022
The Center for Chronic Illness Web-Based Rare Chronic Illness Support Group
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
Find out more »The Center for Chronic Illness WA State Rare Chronic Illness Support Group
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!
Find out more »The MDS Foundation’s MDS Patient and Family/Caregiver Forum
MDS Patient & Family/Caregiver Forum September 10, 2022 Presenters: Paul J. Shami, MD and Afaf Osman, MD, Huntsman Cancer 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.
Find out more »The Center for Chronic Illness: Parenting Chronic Illness Webinar
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
Find out more »The Ehlers-Danlos Society’s 2022 International Scientific Symposium on the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders Community Day
2022 International Scientific Symposium on the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders Community Day EDS & HSD Untangled: Ask The Experts---A Hybrid Conference September 18, 2022 The Ehlers-Danlos Society is delighted to announce Community Day of the International Scientific Symposium on the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders, taking place on September 18, 2022. EDS and HSD Untangled: Ask the Experts is a hybrid event, taking place in Rome, Italy, with an exciting virtual attendance option for people worldwide. This event…
Find out more »Burning Nights’ Online CRPS Support Group
Online CRPS Support Group August 17, 2022 Join Burning Nights CRPS Support for our next online (CRPS) peer support group on Wednesday 17 August 2022. Our online peer support groups are for anyone affected by CRPS such as patients, relatives, friends, partners or carers. These take place once a month. Our next online CRPS support group is being held on WEDNESDAY 17 AUGUST 2022 starting at 2:00 pm British Summer Time (UK Summer Time). To register, click here.
Find out more »Dreamsickle Kids Foundation’s 5th Annual Las Vegas Sickle Cell Walk
The 5th Annual Las Vegas Sickle Cell Walk September 24, 2022 Dreamsickle Kids Foundation 5th Annual Las Vegas Sickle Cell Walk, this event is the only fundraiser we have to raise money and awareness for patients in Nevada affected with Sickle Cell Disease. Sickle Cell Disease is a rare genetic blood disorder that primarily affects those of African descent. There are 100,000 Americans living with Sickle Cell and 1000 of them reside in Nevada. The Las Vegas Sickle Cell walk…
Find out more »GACI Global’s Worldwide Walk
GACI Global's Worldwide Walk September 25, 2022 The GACI/ARHR2 community, their family, friends, and supporters from around the world will be unified on one day, around one shared cause, when we participate in the 3rd annual GACI Global Worldwide Walk. Each team will fundraise in an effort to raise awareness and to raise money to change the future for those affected by GACI/ARHR2 today and those born with GACI in the future. To sign up and learn more, click here.
Find out more »October 2022
Danny’s Dose’s Family Education Event: Hot Springs, AR
Danny's Dose Family Education Event: Hot Springs, AR October 1, 2022 EDUCATION: Learn the "STEPS TO PROTECTION" for proper EMERGENCY PREPAREDNESS, "TREATMENT PLANS", working with your EMS/ER Staff, your existing state protocols & more! PLUS - enjoy a day of fun! AGENDA: 10:30 – 11:00: Registration 11:00 – 1:00: Lunch & Fun Time 1:00 – 3:00: Education Sessions & Break 3:00 -- 5:00: Free Time to enjoy the locationVendors will be available throughout the afternoon from…
Find out more »SYNGAP1 Research Foundation’s 4th SYNGAP1 Golf Classic
4th Annual SYNGAP1 Golf Classic October 3, 2022 We are hosting our Fourth Annual SYNGAP1 Golf Classic and Silent Auction on Monday, October 3, 2022, at PANORAMA GOLF CLUB, 73 Greenbriar Dr. Conroe, TX 77304, at 11:00 am Shotgun Start. In previous years we have had a great turnout and successful event. We hope you can also help this year’s events be a huge success. Your generous contribution will be used for life-changing programs that will benefit our SYNGAP1 patient…
Find out more »The Center for Chronic Illness Web-Based Rare Chronic Illness Support Group
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
Find out more »World Alliance of Pituitary Organizations’ Webinar: Protocol for Acromegaly Patient Care
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…
Find out more »HCU Network America’s Classical HCU Parent-Caregiver Online Meetup
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.
Find out more »Glut1 Deficiency Foundation’s Virtual Community Gatherings: Comunidad Hispana
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…
Find out more »HCU Network America’s Classical HCU Virtual Meet-Up
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…
Find out more »The Center for Chronic Illness: Parenting Chronic Illness Webinar
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
Find out more »The PBCers Organization’s 2022 PBC Conference
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 [email protected] To register, click here.
Find out more »The Center for Chronic Illness WA State Rare Chronic Illness Support Group
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!
Find out more »The MDS Foundation’s MDS Patient and Family/Caregiver Forum
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.
Find out more »Glut1 Deficiency Foundation’s Virtual Community Gatherings: Adult Overcomers
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…
Find out more »National Organization for Rare Disorders’ Rare Diseases + Orphan Products Breakthrough Summit
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…
Find out more »World Alliance of Pituitary Organizations’ Webinar: Fighting Against the Global Issue of Substandard and Falsified (SF) Medical Products
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…
Find out more »Danny’s Dose’s Family Education Event: Baton Rouge, LA
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.
Find out more »Glut1 Deficiency Foundation’s Virtual Community Gatherings: Parents
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…
Find out more »Glut1 Deficiency Foundation’s Virtual Community Gatherings: Child Glut1 Pals
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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