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March 2024
Amyloidosis Foundation’s 2024 Light the Night for Amyloidosis Month
2024 Light the Night for Amyloidosis Month March 1-31, 2024 "Light the Night for Amyloidosis" is an awareness campaign created to draw attention to amyloidosis symptoms, diagnosis, treatment, and hopefully a cure! Since 'Amyloidosis Awareness Month' occurs in March, we are asking everyone to light up their porch/entryway with red bulbs in March. We have also contacted many US landmarks and businesses to do the same in March 2023. Below is a list of the approved requests, along with the date…
Find out more »April 2024
CureDuchenne’s Cares Workshop: Long Island, NY
CureDuchenne Cares Workshop April 6, 2024 Long Island, NY A FULL DAY EVENT FOCUSED ON IMPROVING THE QUALITY OF LIFE FOR INDIVIDUALS WITH DUCHENNE AND BECKER. CureDuchenne Cares is an interactive education and outreach program designed to provide the community with information, resources and best practices for managing the challenges of Duchenne and Becker to help improve overall quality of life. These one-day events provide an immersive education experience, where clinicians and experts share their wealth of Duchenne knowledge as…
Find out more »CureDuchenne’s Cares Dinner Session: Pittsburgh, PA
CureDuchenne Cares Dinner Session April 13, 2024 Pittsburgh, PA A NEIGHBORHOOD DINNER FOR CAREGIVERS AFFECTED BY DUCHENNE AND BECKER JOIN US FOR A CASUAL THREE-HOUR DINNER ON SATURDAY EVENING TO TALK ABOUT YOUR FAMILY’S STORY, HEALTH AND WELLNESS, COPING, AND OVERALL DISEASE MANAGEMENT. CureDuchenne Cares is an interactive education and outreach program designed to provide the community with information, resources and best practices for managing the challenges of Duchenne and Becker to help improve overall quality of life. Dinner is…
Find out more »A Breath of Hope Foundation for NMO’s Brewery Night
Brewery Night Hosted by the Young Leaders Board April 15, 2024 Bricksworth Beer Co, Minneapolis, MN Learn more about lung cancer by visiting A Breath of Hope’s Young Leaders Board on the evening of April 15th at Bricksworth Beer Co in Minneapolis. One dollar from every craft beer sold that night will go to A Breath of Hope Lung Foundation to further lung cancer education and patient and family support. Find more information about Bricksworth Beer Co here.
Find out more »May 2024
A Breath of Hope Foundation for NMO’s Women’s Wellness Tea
Women's Wellness Tea May 11, 2024 Golden Valley Country Club The Women’s Wellness Tea is an educational, social (and very fun!) event that celebrates women while exploring habits that lead to healthy, happy lives. Event Itinerary 10 am: Check-in | Silent Auction | Cash Bar 11 am – 12:15 pm: Brunch | Keynote | Hat Contest 12:30 – 1:30 pm: Breakout Sessions 1:30 – 2 pm: Social/Networking | Check-out
Find out more »CureDuchenne’s FUTURES National Conference
FUTURES National Conference May 23-26, 2024 Orlando, FL The CureDuchenne FUTURES National Conference is an annual event focused on bringing education, connection, and hope to the entire Duchenne community. Get ready to transform the future of Duchenne research and, hold on tight, because we'll also be busting some serious dance moves together! Patient registration is totally FREE. To sign up, click here.
Find out more »June 2024
The FSHD Society’s 2024 FSHD Patient Connect Conference
$225
The 2024 FSHD Patient Connect Conference June 15-16, 2024 Denver, CO The FSHD Connect 2024 will be hosted on June 15-16 in Denver, Colorado. Held every two years, it is the world's biggest networking event for FSHD, bringing together hundreds of individuals and families living with FSH muscular dystrophy, clinicians, and researchers for two days of immersive learning and workshops. Attendees find out about the latest research, drug developments, and clinical trials, as well as a wealth of news you can…
Find out more »HCU Network America’s Moving Mountains HCU Conference
Moving Mountains HCU Conference 2024 June 29-30, 2024 Aurora, Colorado The HCU Network America’s 4th patient-expert conference will be held on June 29-30, 2024, in Aurora, CO. This is an opportunity for patients, parents, relatives, medical professionals, researchers, and industry reps to come together to move mountains for HCU. To register, click here.
Find out more »July 2024
Alport Syndrome Foundation’s Alport Connect 2024 In-Person Meeting
Alport Connect 2024 July 27-28, 2024 Denver, CO ASF’s patient and family meeting, Alport Connect, will return in 2024. The in-person event will be held in Denver, Colorado. Please check back for additional information as the event nears. We wanted to let our community know the dates and location as soon as possible so you can plan to join us in Colorado this summer! Additional details about this year’s event, including the venue, lodging options, and ticket reservations, will be…
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