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March 2024
CureDuchenne’s Cares Workshop: Baltimore, MD
CureDuchenne Cares Workshop March 9, 2024 Baltimore, MD 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 well…
Find out more »CureDuchenne’s Champions of Miami Fundraiser 2024
Champions in Miami 2024 March 9, 2024 Miami, FL This gala is not just an exquisite gathering; it serves as a significant source of support for CureDuchenne, empowering the organization to invest in cutting-edge research aimed at discovering a cure for individuals facing Duchenne muscular dystrophy. Thanks to the immense generosity of the Miami community, Champions in Miami has already channeled more than $2 million into research and support for families living with Duchenne muscular dystrophy since 2021. But we believe this…
Find out more »The MDS Foundation’s 3rd Regional Symposium on Myelodysplastic Syndromes
3rd Regional Symposium on Myelodysplastic Syndromes March 15-16, 2024 Kyoto, Japan The 3rd Regional Symposium on Myelodysplastic Syndromes will take place from 15-16 March 2024, in Kyoto, Japan. MDS is a community of international medical professionals who share the common goal of exchanging knowledge about Myelodysplastic Syndromes. This symposium will offer an opportunity to enhance the latest science and advancements in MDS, and a chance to bring the MDS community together to connect and collaborate. To register, click here.
Find out more »CureDuchenne’s Cares Dinner Session: Tampa, FL
CureDuchenne Cares Dinner Session March 16, 2024 Tampa, FL 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 »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 »The MDS Foundation’s MDS Patient and Family Forum
MDS Patient & Family Forum April 6, 2024 Baltimore, MD Many patients and caregivers have never met another person diagnosed with MDS until they connected with them at one of our forums. If you've never attended one, you won't want to miss this opportunity to meet others and to learn more about MDS, current treatments, and emerging therapies from leading experts. Not only will you find answers, support, and hope for MDS, but you will learn tips and strategies from…
Find out more »The MDS Foundation’s Move for MDS Community Walk: Tampa, FL
Move for MDS Walk April 7, 2024 Tampa, FL Register for your local Move for MDS community walk, fundraise and show support to those effected by MDS by joining the Myelodysplastic Syndromes Foundation in our fight against MDS. 100% of every $1 donated goes towards increasing awareness and accelerating critical research. A friendly 5K for everybody! Run, walk, wheel, or any movement you prefer JOIN THE MOVEMENT! Register Walk your 5k (3.1 miles) Celebrate your success! Use our fundraising &…
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
The MDS Foundation’s Move for MDS Community Walk: Nashville, TN
Move for MDS Walk May 5, 2024 Nashville, TN Register for your local Move for MDS community walk, fundraise and show support to those effected by MDS by joining the Myelodysplastic Syndromes Foundation in our fight against MDS. 100% of every $1 donated goes towards increasing awareness and accelerating critical research. A friendly 5K for everybody! Run, walk, wheel, or any movement you prefer JOIN THE MOVEMENT! Register Walk your 5k (3.1 miles) Celebrate your success! Use our fundraising &…
Find out more »The BHD Foundation’s BHD Community Virtual Symposium 2024
The BHD Foundation's BHD Community Symposium 2024 October 12, 2024 This year's symposium is focussed on the patient community. The agenda is being set by the patients following feedback from a patient survey. Patients and family members will be able to learn more about BHD from clinicians and patients who have lived experience. We will be providing an update on currently funded research by the Myrovlytis Trust direct from the researchers. Patients and family members will also have the opportunity…
Find out more »The MDS Foundation’s MDS Patient and Family Forum
MDS Patient & Family Forum May 11, 2024 St. Louis, MO Many patients and caregivers have never met another person diagnosed with MDS until they connected with them at one of our forums. If you've never attended one, you won't want to miss this opportunity to meet others and to learn more about MDS, current treatments, and emerging therapies from leading experts. Not only will you find answers, support, and hope for MDS, but you will learn tips and strategies…
Find out more »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
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 »The Marfan Foundation’s Global Virtual Conference
The Global Virtual Conference June 17-22, 2024 The Marfan Foundation’s Global Virtual Conference connects people living with genetic aortic and vascular conditions, their loved ones, healthcare providers, and researchers from around the world for a unique event that holistically explores the many facets of life with Marfan, Loeys-Dietz, VEDS, and related conditions. Topics include advancements in medical management, mental health and well-being, the latest research, community-building, and much more. A series of live, engaging sessions will culminate with a virtual…
Find out more »The BHD Foundation’s Meet the Expert World Pneumothorax Day Webinar
The BHD Foundation's Meet the Expert World Pneumothorax Day Webinar June 24, 2024 Join us on World Pneumothorax Day for a special Meet the Expert event! We will be joined by Professor Stefan Marciniak of Cambridge University and Professor Simon Johnson of Nottingham University who will be talking about the latest information about BHD and pneumothorax. Includes a Q&A session where you can ask the experts! To sign up, click here.
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 »The MDS Foundation’s MDS Patient and Family Forum
MDS Patient & Family Forum June 29, 2024 San Diego, CA Many patients and caregivers have never met another person diagnosed with MDS until they connected with them at one of our forums. If you've never attended one, you won't want to miss this opportunity to meet others and to learn more about MDS, current treatments, and emerging therapies from leading experts. Not only will you find answers, support, and hope for MDS, but you will learn tips and strategies…
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…
Find out more »August 2024
The MDS Foundation’s Move for MDS Community Walk: Chicago, IL
Move for MDS Walk August 25, 2024 Chicago, IL Register for your local Move for MDS community walk, fundraise and show support to those effected by MDS by joining the Myelodysplastic Syndromes Foundation in our fight against MDS. 100% of every $1 donated goes towards increasing awareness and accelerating critical research. A friendly 5K for everybody! Run, walk, wheel, or any movement you prefer JOIN THE MOVEMENT! Register Walk your 5k (3.1 miles) Celebrate your success! Use our fundraising &…
Find out more »September 2024
The MDS Foundation’s Move for MDS Community Walk: New York, NY
Move for MDS Walk September 22, 2024 New York, NY Register for your local Move for MDS community walk, fundraise and show support to those effected by MDS by joining the Myelodysplastic Syndromes Foundation in our fight against MDS. 100% of every $1 donated goes towards increasing awareness and accelerating critical research. A friendly 5K for everybody! Run, walk, wheel, or any movement you prefer JOIN THE MOVEMENT! Register Walk your 5k (3.1 miles) Celebrate your success! Use our fundraising…
Find out more »October 2024
The MDS Foundation’s MDS Patient and Family Forum
MDS Patient & Family Forum October 5, 2024 New Haven, CT Many patients and caregivers have never met another person diagnosed with MDS until they connected with them at one of our forums. If you've never attended one, you won't want to miss this opportunity to meet others and to learn more about MDS, current treatments, and emerging therapies from leading experts. Not only will you find answers, support, and hope for MDS, but you will learn tips and strategies…
Find out more »The MDS Foundation’s Move for MDS Community Walk: Boston, MA
Move for MDS Walk October 20, 2024 Boston, MA Register for your local Move for MDS community walk, fundraise and show support to those effected by MDS by joining the Myelodysplastic Syndromes Foundation in our fight against MDS. 100% of every $1 donated goes towards increasing awareness and accelerating critical research. A friendly 5K for everybody! Run, walk, wheel, or any movement you prefer JOIN THE MOVEMENT! Register Walk your 5k (3.1 miles) Celebrate your success! Use our fundraising &…
Find out more »November 2024
The MDS Foundation’s MDS Patient and Family Forum
MDS Patient & Family Forum November 2, 2024 Birmingham, AL Many patients and caregivers have never met another person diagnosed with MDS until they connected with them at one of our forums. If you've never attended one, you won't want to miss this opportunity to meet others and to learn more about MDS, current treatments, and emerging therapies from leading experts. Not only will you find answers, support, and hope for MDS, but you will learn tips and strategies from…
Find out more »
