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August 2022

Burning Nights’ Online CRPS Support Group

August 17 @ 2:00 pm - 3:00 pm

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.

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

August 20 @ 10:00 am - 11:00 am

Classical HCU Parent-Caregiver Online Meetup August 20, 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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HCU Network America’s Cobalamin Disorders Virtual Meet-Up

August 20 @ 10:00 am - 11:00 am

Cobalamin Disorders with Homocystinuria Meetup August 20, 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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HCU Network America’s Classical HCU Virtual Meet-Up

August 21 @ 2:00 pm - 3:00 pm

Classical HCU Virtual Meet-Up August 21, 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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September 2022

HCU Network America’s HCU Heroes Race for Research

September 1 - September 30
$30

HCU Heroes Race for Research September 1-30, 2022 Set with the participants convenience, geography and their pace in mind, in 2019 our first race launched with just 14 participants and raising just over $4,000. Since then our HCU Race for Research has raised over $45,000 for homocystinuria research and last year had 147 participants! These races are convenient, fun and competitive way to support the efforts of HCU Network America (HCUNA). We sincerely appreciate your support for this event and…

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

September 6 @ 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 Center for Chronic Illness WA State Rare Chronic Illness Support Group

September 9 @ 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

September 10 @ 9:00 am - 2:30 pm
Huntsman Cancer Hospital, 2000 Circle Of Hope
Salt Lake City, UT 84112
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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.

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The Center for Chronic Illness: Parenting Chronic Illness Webinar

September 12 @ 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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Burning Nights’ Online CRPS Support Group

September 14 @ 2:00 pm - 3:00 pm

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.

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Dreamsickle Kids Foundation’s 5th Annual Las Vegas Sickle Cell Walk

September 24 @ 7:30 am - 11:30 am
7351 W Alexander Rd, 7351 W Alexander Rd
Las Vegas, NV 89129 United States
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$30

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…

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October 2022

SYNGAP1 Research Foundation’s 4th SYNGAP1 Golf Classic

October 3 @ 11:00 am - 5:00 pm
Panorama Golf Club, 73 Greenbriar Drive
Conroe, TX 77304 United States
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$175

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…

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

October 4 @ 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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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.

Find out more »

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…

Find out more »

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

Find out more »

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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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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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.

Find out more »

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

Find out more »

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!

Find out more »

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

Find out more »

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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December 2022

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

December 6 @ 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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