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January 2021

The FH Foundation’s FH Global Summit: Lp(a) and Drivers of Inherited Risk

January 27 @ 12:00 pm - 1:30 pm

The FH Global Summit Session 4: Lp(a) and Drivers of Inherited Risk January 27, 2021 This session will investigate lipoprotein (a), which has been identified as an independent risk factor for premature atherosclerotic cardiovascular disease. Attend to learn more about emerging therapies and evolving guidelines for who should get screened for Lp(a). Click here to sign up.

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Rare Disease Legislative Advocates’ January Webinar

January 28 @ 12:00 pm - 1:00 pm

The Rare Disease Legislative Advocates' Monthly Webinar January 28, 2021 This months' webinar from the RDLA will focus on the policy priorities of the Everylife Foundation for year 2021, as well as the policy priorities for the Personalized Medicine Coalition. Specific goals to be discussed in this webinar include Cures 2.0, the Medical Nutrition Equity Act, and newborn screening/diagnostics. Click here to get signed up.

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February 2021

The IWMF’s Global Educational Webinar: Why Clinical Trials Matter and How to Find the Right One for You

February 9 @ 1:30 pm - 2:30 pm

2021 IWMF GLOBAL EDUCATIONAL WEBINAR Why Clinical Trials Matter and How to Find the Right One for You February 9th, 2021 Featuring Neena Kennedy, RN, BSN, OCN Clinical trials are absolutely vital to the development of new therapies. The IWMF has always strongly supported the involvement of WM patients in clinical trials. This webinar will explore the different types of clinical trials and how they operate, the factors that go into deciding whether a trial might be right for you,…

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Burning Nights’ Online CRPS Support Group

February 10 @ 2:00 pm - 4:30 pm

Join Burning Nights CRPS Support for our next online complex regional pain syndrome (CRPS) support group on Wednesday, February 10, 2021. Burning Nights CRPS Support are still continuing to provide monthly online support groups for those affected by this syndrome. These support groups are for caregivers, patients, and family members. Click here to sign up.

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The FH Foundation’s FH Global Summit: New Frontiers of FH Care

February 17 @ 12:00 pm - 1:30 pm

The FH Global Summit Session 5: New Frontiers of FH Care February 17, 2021 This session will focus on the future of FH care. Can CRISPR gene editing technology help treat cardiovascular illness? Is it possible to look beyond the known genes associated with FH to determine a personal risk assessment? Click here to sign up.

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March 2021

National Institutes of Health’s Virtual Rare Disease Day

March 1 @ 10:30 am - 5:30 pm

Rare Disease Day at NIH March 1, 2021 Rare Disease Day is held every year to help raise awareness surrounding rare diseases and the people that are impacted by them. The event also aims to inform the public about the ongoing research collaborations involving the NIH that are vital to improving the lives of patients. While this year's event will be hosted virtually due to the ongoing COVID-19 pandemic, it will still include the sharing of rare disease stories, interactive…

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Global Genes and the EveryLife Foundation’s Rare on the Road 2021: A Rare Disease Leadership Interactive Webinar

March 3 @ 11:00 am - 1:30 pm

RARE on the Road 2021: Rare Disease Leadership Tour A Rare Disease Leadership Interactive Webinar March 23, 2021 Global Genes and the EveryLife Foundation for Rare Diseases have worked together since 2017 on the RARE on the Road project, serving to develop new leaders in rare disease advocacy and hosting events around the country. At this time the 2021 tour will include this interactive webinar and three in-person events. The in-person events will be held in accordance with local laws…

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Burning Nights’ Online CRPS Support Group

March 17 @ 2:00 pm - 4:30 pm

Join Burning Nights CRPS Support for our next online complex regional pain syndrome (CRPS) support group on Wednesday, March 17, 2021. Burning Nights CRPS Support are still continuing to provide monthly online support groups for those affected by this syndrome. These support groups are for caregivers, patients, and family members. Click here to sign up.

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April 2021

CureDuchenne’s Champions to CureDuchenne Fundraiser

April 10
The University of Texas Golf Club, 2200 University Club
Dallas, TX 78732 United States
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$1000

Champions to CureDuchenne Join us for a magical evening under the stars. The event features gourmet food, cocktails, casino games, and live and silent auctions for a night of fun and purpose! This fundraiser benefits CureDuchenne and allows them to invest in next generation gene therapy research technology to find a cure for this generation of boys and young men living with Duchenne muscular dystrophy. Through the generous support of the Austin Community, Champions to CureDuchenne has funded more than…

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May 2021

Global Genes and the EveryLife Foundation’s Rare on the Road 2021: In-Person Training and Networking

May 1

RARE on the Road 2021: Rare Disease Leadership Tour In-Person Training and Networking Las Vegas, NV May 1, 2021 Global Genes and the EveryLife Foundation for Rare Diseases have worked together since 2017 on the RARE on the Road project, serving to develop new leaders in rare disease advocacy and hosting events around the country. At this time the 2021 tour will include an interactive webinar and three in-person events. The in-person events will be held in accordance with local…

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Global Genes and the EveryLife Foundation’s Rare on the Road 2021: In-Person Training and Networking

May 15

RARE on the Road 2021: Rare Disease Leadership Tour In-Person Training and Networking Miami, FL May 15, 2021 Global Genes and the EveryLife Foundation for Rare Diseases have worked together since 2017 on the RARE on the Road project, serving to develop new leaders in rare disease advocacy and hosting events around the country. At this time the 2021 tour will include an interactive webinar and three in-person events. The in-person events will be held in accordance with local laws…

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Global Genes and the EveryLife Foundation’s Rare on the Road 2021: In-Person Training and Networking

May 22

RARE on the Road 2021: Rare Disease Leadership Tour In-Person Training and Networking Chicago, IL May 22, 2021 Global Genes and the EveryLife Foundation for Rare Diseases have worked together since 2017 on the RARE on the Road project, serving to develop new leaders in rare disease advocacy and hosting events around the country. At this time the 2021 tour will include an interactive webinar and three in-person events. The in-person events will be held in accordance with local laws…

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July 2021

The GRIN2B Foundation’s 2021 GRIN2B Family Weekend

July 9 - July 10
Hyatt Regency O’Hare, 9300 W Bryn Mawr Ave
Rosemont, IL 60018 United States
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$85

2021 GRIN2B Family Weekend July 9-10, 2021 This event is open to patients and families affected by GRIN2b-related neurodevelopmental disorder and related diseases. The weekend will be focused on building community, education, and providing families with critical support and resources. For registration and travel info, click here.

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Cystinosis Research Network’s 2021 Summer Online Conference

July 15 - July 19

The 2021 CRN Summer Online Conference "The Beat Goes On" July 15-19, 2021 While this event was originally slated to take place in person in Nashville, TN, in light of the ongoing COVID-19 pandemic, the conference will now occur online. This is in the interest of the safety and health of the cystinosis community. Don't miss the event as it is a vital opportunity for education, community support, and fun. For more information about this event, click here.

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