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January 2024

Cell & Gene Therapy Insights’ The Role of AI in Predicting Stem Cell Donor Availability Webinar

January 31 @ 4:00 pm - 5:00 pm

The Role of AI in Predicting Stem Cell Donor Availability Webinar January 31, 2024 The success of unrelated donor stem cell transplants depends on not only finding genetically matched donors but also donor availability. On average, 50% of potential donors in the National Marrow Donor Program database are unavailable for a variety of reasons after initially matching a patient, with significant variations in availability among subgroups (e.g., by race or age). Several studies have established univariate donor characteristics associated with…

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February 2024

CureDuchenne’s Cares Workshop: Atlanta, GA

February 10
Atlanta Marriott Buckhead Hotel and Conference Center, 3405 Lenox Road NE
Atlanta, GA 30326 United States
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CureDuchenne Cares Workshop February 10, 2024 Atlanta, GA 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…

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European Reference Networks for Rare Neurological Diseases’ Newborn screening in leukodystrophies by Lucia Laugwitz

February 20 @ 9:00 am - 10:00 am

'Newborn screening in leukodystrophies' by Lucia Laugwitz February 20, 2024 Educational webinars on rare neurological, neuromuscular and movement disorders jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN). To register, click here.

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CureDuchenne’s Cares Dinner Session: Charlotte, NC

February 24 @ 6:00 pm - 9:00 pm
Eddie V’s Charlotte, 101 S Tryon St
Charlotte, NC 28280 United States
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CureDuchenne Cares Dinner Session February 24, 2024 Charlotte, NC 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…

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March 2024

Amyloidosis Foundation’s 2024 Light the Night for Amyloidosis Month

March 1 - March 31

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…

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Amyloidosis Foundation’s 2nd Annual Bradley Z. Naifeh Amyloidosis Conference

March 2 @ 9:00 am - 5:00 pm
Houston Methodist, 6670 Bertner Ave
Houston, TX 77030 United States
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2nd Annual Bradley Z. Naifeh Amyloidosis Conference March 2, 2024 Houston, TX Presented by the Bradley Z. Naifeh Amyloidosis Clinical Research and Treatment Program at Houston Methodist J.C. Walter Jr. Transplant Center. Amyloidosis is an underrecognized condition because it has historically been misconceived to be a rare disease and presents in a myriad of clinical situations in a subtle manner. Recent advances in therapeutics have made it imperative that this condition is recognized and categorized appropriately in a timely manner…

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CureDuchenne’s Cares Workshop: Baltimore, MD

March 9 @ 8:00 am - 4:00 pm
Baltimore Marriott Inner Harbor at Camden Yards, 110 S Eutaw St
Baltimore, MD 21201 United States
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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…

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CureDuchenne’s Champions of Miami Fundraiser 2024

March 9 @ 6:00 pm - 11:00 pm
Kimpton Surfcomber, 1717 Collins Ave
Miami, FL 33139 United States
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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…

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The MDS Foundation’s 3rd Regional Symposium on Myelodysplastic Syndromes

March 15 - March 16
1 Charles St
Boston, MA 02108 United States
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$225

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. 

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CureDuchenne’s Cares Dinner Session: Tampa, FL

March 16 @ 6:00 pm - 9:00 pm
Seasons 52 Tampa, 204 N Westshore Drive
Tampa, FL 33609 United States
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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…

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April 2024

CureDuchenne’s Cares Workshop: Long Island, NY

April 6 @ 8:00 am - 4:00 pm
Marriott Melville Long Island, 1350 Walt Whitman Road
Melville, NY 11747 United States
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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…

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The MDS Foundation’s MDS Patient and Family Forum

April 6 @ 9:00 am - 2:00 pm
Sidney Kimmel Comprehensive Cancer Center at John Hopkins, 401 N Broadway
Baltimore, MD 21231 United States
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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…

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The MDS Foundation’s Move for MDS Community Walk: Tampa, FL

April 7 @ 8:00 am - 11:30 am
Gadsden Park, 6901 S MacDill Ave
Tampa, FL 33611 United States
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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 &…

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CureDuchenne’s Cares Dinner Session: Pittsburgh, PA

April 13 @ 6:00 pm - 9:00 pm
Grand Concourse, 100 W Station Square Dr.
Pittsburgh, PA 15219 United States
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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…

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A Breath of Hope Foundation for NMO’s Brewery Night

April 15 @ 5:00 pm - 9:00 pm
Bricksworth Beer Co., 305 5th Ave North, Suite 105
Minneapolis, MN 55401 United States
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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.

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May 2024

The MDS Foundation’s Move for MDS Community Walk: Nashville, TN

May 5 @ 8:00 am - 11:00 am
Two Rivers Park, 3150 McGavock Pk
Nashville, TN 37214 United States
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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 &…

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The BHD Foundation’s BHD Community Virtual Symposium 2024

May 6 @ 8:00 am - 5:00 pm

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…

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The MDS Foundation’s MDS Patient and Family Forum

May 11 @ 9:00 am - 2:00 pm
Washington University School of Medicine Eric P. Newman Education Center, 320 S. Euclid Ave
St. Louis, MO 63110 United States
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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…

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A Breath of Hope Foundation for NMO’s Women’s Wellness Tea

May 11 @ 10:00 am - 2:00 pm
Golden Valley Country Club, 7001 Golden Valley Rd
Golden Valley, MN 55427 United States
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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

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CureDuchenne’s FUTURES National Conference

May 23 - May 26
JW Marriott Orlando, 4040 Central Florida Pkwy
Orlando, FL 32837 United States
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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.

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June 2024

The FSHD Society’s 2024 FSHD Patient Connect Conference

June 15 - June 16
Hilton Denver City Center, 1701 California St
Denver, CO 80202 United States
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$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…

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The Marfan Foundation’s Global Virtual Conference

June 17 - June 22

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…

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The BHD Foundation’s Meet the Expert World Pneumothorax Day Webinar

June 24 @ 1:00 pm - 2:00 pm

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.

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HCU Network America’s Moving Mountains HCU Conference

June 29 - June 30
Doubletree by Hilton Hotel Denver, 13696 E Iliff Place
Aurora, CO 80014 United States
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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.

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The MDS Foundation’s MDS Patient and Family Forum

June 29 @ 8:30 am - 2:00 pm
Moores Cancer Center at UC San Diego Health, 3855 Health Sciences Dr
San Diego, CA 92037 United States
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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…

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