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News & Events
Newsroom
May
21
,
2026
Relay Therapeutics Update on Zovegalisib (RLY-2608)
April
22
,
2026
MDBR: Learn More About In-Person Participation
April
21
,
2026
Lymphatic Malformation Awareness Month
April
9
,
2026
Investing in the Future: Meet the Alfie Milne Young Investigator Award Recipients
April
3
,
2026
Progress is Building — Step by Step
March
31
,
2026
Start Where You Are: Fundraising for CLA Research
March
25
,
2026
One Ride. Many Ways to Make an Impact for CLA Research
March
18
,
2026
Community Voice Winter Newsletter – Now Available
February
25
,
2026
Positive Phase 3 Trial Results Announced for Microcystic Lymphatic Malformations
February
24
,
2026
Propranolol Treats Congenital Chylothorax in Newborn: Case Report
February
18
,
2026
Handmade Sock Monkey Keepsakes – A Special UK Fundraiser Supporting CLA and LM Research
February
9
,
2026
14 Altruistic Ways to Celebrate Valentine’s Day
January
29
,
2026
Rare Disease Day, February 28
January
27
,
2026
Scientists Grow 3D Lymphatic Tissues from Patient Biopsies
January
7
,
2026
Remembering John "Jack" F. Kelly
January
6
,
2026
A Hopeful Step Forward for Children with Lymphatic Malformations
January
3
,
2026
The Orphan Drug Act: Driving Innovation for Rare Diseases
December
18
,
2025
A New Hope for Children with Kaposiform Lymphangiomatosis
December
17
,
2025
Holiday Stress-Relief Tips for Patients & Caregivers
December
11
,
2025
Why Dentists Should Know More About the Lymphatic System: Lessons from Rare Disorders
December
8
,
2025
Shine a Light on the Rare Disease Community: Enter the EURORDIS Photo Award 2026
November
21
,
2025
Protara Shares Promising Interim Data from Ongoing TARA-002 Phase 2 Trial
November
13
,
2025
National Family Caregivers Month 2025
October
30
,
2025
Announcing the 2025 Alfie Milne Young Investigator Award Recipients
October
27
,
2025
Gorham-Stout Disease and the Role of Dentists in Early Detection
October
23
,
2025
Shared Pathways, Shared Progress: How CLA and LM Research Advance Together
October
22
,
2025
Building the Future Together: The New LM Patient Registry
October
16
,
2025
Did You Know? The Power of Multidisciplinary Care for Lymphatic Malformations
October
8
,
2025
Genes Behind Isolated Lymphatic Malformations: Macrocystic, Microcystic, and Mixed
October
7
,
2025
Three New National Plans for Rare Diseases
October
6
,
2025
Expanding the Spectrum of Gorham-Stout Disease
September
30
,
2025
New Research Models Offer Hope for Understanding and Treating CLAs
September
25
,
2025
Chiari Malformation and Gorham-Stout Disease: Understanding the Connection
September
23
,
2025
Understanding Lymphatic Malformations: Why Terminology Matters
September
16
,
2025
Pregnancy and PIK3CA-Related Overgrowth Spectrum: New Insights from Alpelisib Treatment
August
21
,
2025
National Grief Awareness Day — Honouring Children Gone Too Soon
August
21
,
2025
Announcing the LGDA T-Shirt Design Contest Champion
August
7
,
2025
Back to School with a Rare Disease: Tips for Parents
August
4
,
2025
Turning Art into Advocacy: An Interview with Maurizio De Angelis
July
28
,
2025
A New Chapter for LGDA
July
7
,
2025
Rhode Island Takes Big Step Forward for Rare Disease Patients
June
24
,
2025
Venous Malformations: How Nanotechnology is Shaping the Future of Treatment
June
23
,
2025
How One Scientist Is Helping Us Understand a Rare Lymphatic Disease
June
19
,
2025
Running for Coby – My Half Marathon in a Kermit Costume (and 9kg on My Back!)
June
10
,
2025
New Medical Classification Sheds Light on Complex Lymphatic Anomalies
May
19
,
2025
Investing in the Future of CLA Research: The Power of the Alfie Milne Young Investigator Award
May
19
,
2025
Protecting Mental Health as a Caregiver
May
12
,
2025
The LGDA’s Role in Advancing Rare Disease Drug Repurposing: Highlights from the ROADMAP Study
May
10
,
2025
Rare Case of Mandibular Osteolysis in Gorham-Stout Disease
May
8
,
2025
CLA Awareness Day: Shining a Light on Complex Lymphatic Anomalies
May
6
,
2025
Small Steps, Big Impact: 31 Tips to Boost Your Mental Health
May
1
,
2025
Planning for Pregnancy with Vascular Anomalies: New Guidance from VASCERN
April
11
,
2025
Exploring KLA Research with Griffin McDaniel: Insights into Vascular Anomalies and Future Treatments
April
9
,
2025
National Siblings Day: Recognizing the Unseen Heroes in CLA Families
April
9
,
2025
Unleash Your Creativity for a Cause: Join the T-Shirt Design Contest!
April
2
,
2025
Finding Connection and Support: The LGDA Peer-to-Peer Program
March
26
,
2025
Pedaling Towards Progress: The 2025 Million Dollar Bike Ride for Rare Disease Research
March
26
,
2025
From Patient to Physician: Adel's Rare Diagnosis Shaped His Journey
March
25
,
2025
Global Experts Unite to Forge New Consensus of Care Guidelines for CLAs
March
24
,
2025
Novadip Biosciences' NVDX3 - A New Hope for Bone Healing
March
12
,
2025
Highlighting the Importance of Collaboration: A Case Study from the Student Voice Prize
March
7
,
2025
Pioneering the Future of CLA Care: An Exclusive Interview with Dr. Bryan Sisk
February
24
,
2025
Dive into Rare Disease Week 2025 – Engage from Anywhere
February
20
,
2025
Advocacy Alert: Support NIH Research Funding
February
19
,
2025
Bereavement and Grief: Support and Understanding After Losing a Loved One to CLAs
February
17
,
2025
Empowering Understanding: New Mental Health Factsheets from Rare Voices Australia
February
15
,
2025
Understanding & Supporting Parents of Children with Vascular Anomalies
February
4
,
2025
New Insights into Vascular Malformation Treatments
January
17
,
2025
LGDA Advocates for Critical Rare Disease Policies with Presidential Administration
January
14
,
2025
Exciting Progress in the Fight Against Cutaneous Venous Malformations
December
11
,
2024
Advancing Research and Care for Complex Lymphatic Anomalies
November
26
,
2024
The Caregiver’s Guide to Maintaining a Comprehensive Patient File
November
21
,
2024
Navigating Loss and Redefining Life After a Life-Changing Diagnosis
November
14
,
2024
Top 10 Tips for Daily Self-care and Caregiving Support
November
13
,
2024
2024 Recipients of the Alfie Milne Young Investigator and LMI Pilot Awards
November
5
,
2024
The Power of Guidelines: Reimagining Hayley's Journey with Consensus of Care
October
30
,
2024
The Cost of Developing Consensus of Care Guidelines: An Investment in Patient Care
October
24
,
2024
How Consensus of Care Guidelines Are Created: A Roadmap to Comprehensive Patient Care
October
23
,
2024
National Organization for Rare Disorders Launches the Living Rare Study – First to Measure Full Scope of Rare Disease Challenges
October
16
,
2024
Transitioning from Pediatric to Adult Healthcare: A Critical Journey for Rare Disease Patients
October
10
,
2024
Nutrition and Low-Fat Diets for Managing Chyle Leaks: Helpful Resources and Meal Ideas
October
1
,
2024
What is Protein-losing enteropathy (PLE)?
September
12
,
2024
Evolving CLA: Insights on GLA and GSD
September
6
,
2024
Advocating for Your Child with a Rare Disease at School
August
28
,
2024
Join the PCAC and Make a Lasting Impact on the CLA Community
August
26
,
2024
Consensus of Care Guidelines: A Guide for Patients and Families
August
22
,
2024
Nurturing Your Relationship While Coping with a CLA or LM: A Guide for Couples and Parents
August
21
,
2024
LGDA's Response to Proposed NIH Reforms
August
20
,
2024
My Experience at the Scientific World Congress 2024: ISSVA - A Beacon of Hope for the CLA Community - Tracy Milne
by
Tracy Milne
August
20
,
2024
ISSVA 2024 World Scientific Conference Highlights on Complex Lymphatic Anomalies
August
19
,
2024
Addressing Capillary Lymphatic Venous Malformations (CLVM) Through Sirolimus Treatment
July
18
,
2024
Fundraise for LGDA with JustGiving
July
15
,
2024
Celebrating a Milestone: Over $60K Raised for CLA Research!
July
1
,
2024
A Guide for Those Newly Diagnosed with a CLA or LM
June
24
,
2024
Starting Conversations About Living With a Rare Condition
June
20
,
2024
Advancing Treatment for CLAs with Innovative Drug Therapy
June
13
,
2024
A Journey of Determination and Hope: Ioana & Maya's Story
June
12
,
2024
Navigating Medical Appointments: A Comprehensive Guide for the CLA Community
June
6
,
2024
Finding Strength Through Challenges: Sarah Whyte's Inspiring Journey
May
31
,
2024
Pioneering Advances in CLA Research: A 2024 Update from the GOSH-UCL Team
May
15
,
2024
Join LGDA's Board of Directors: Help Shape the Future for CLA Patients
May
14
,
2024
Uncertainty Unveiled: How Ambiguous Medical Communication Affects Families with Rare Diseases
May
13
,
2024
Explore our Spring Edition Newsletter!
May
8
,
2024
Ruby Cohen: A Young Entrepreneur's Journey Through CCLA and Research
May
8
,
2024
Just a mom.....
May
7
,
2024
Join Us for the Million Dollar Bike Ride: Pioneering Research for Rare Diseases
May
3
,
2024
Unlocking New Horizons: The Launch of a £12M Research Centre for Rare Disease Trials
April
26
,
2024
Navigating Complex Lymphatic Anomalies: The Evolving Landscape of Treatment
April
23
,
2024
The Power of Storytelling: Connecting, Inspiring, and Educating
April
20
,
2024
Exploring the Role of NRAS Q61R Mutation in Kaposiform Lymphangiomatosis
April
15
,
2024
Announcing the Winner of the MDBR T-shirt Design Contest!
April
13
,
2024
Navigating the Complexities of Lymphatic Effusions in Newborns: A Multidisciplinary Approach
April
10
,
2024
Finding Our Way Through Grief After Losing a Loved One to a CLA
March
30
,
2024
Revolutionizing Lymphatic Anomaly Treatments: Insights from Engineering
March
29
,
2024
What is lymphatic drainage, and does it help CLA patients?
March
28
,
2024
Navigating the Teenage Years
March
16
,
2024
Revolutionizing Lymphatic Anomaly Treatments: Insights from Engineering
March
8
,
2024
New Insights in Lymphatic Health: The Impact of Genetic Mutations
March
1
,
2024
Unraveling the Mystery of Lymphatic-Related Hydrops: A Journey of Discovery and Hope
February
28
,
2024
VASCERN-VASCA Consensus Statement: Sirolimus and Fertility
February
27
,
2024
Highlighting Men's Mental Health within the Community
February
23
,
2024
Breakthrough Research Offers Hope for Gorham Stout Disease Patients
February
17
,
2024
Advancing Diagnosis and Treatment of Isolated Lymphatic Malformations
February
11
,
2024
New EU Disability and Parking Card Initiative: A Leap Towards Equal Rights and Free Movement
February
8
,
2024
Navigating the Complex World of Lymphatic Anomalies: Breakthroughs from Lung Disease Research
February
5
,
2024
Crafting an Informative Letter to Your Child's School
by
Diane Bomberg, Chair, Patient & Community Advisory Council
February
3
,
2024
Decoding Lymphatic Anomalies: Breakthroughs from Mouse Studies
January
30
,
2024
A Guide to Supporting Your Child with a Rare Condition
January
24
,
2024
Navigating the Uncharted: The Strength and Struggles of Families
January
23
,
2024
Unveiling the Power of Participation: A Guide to Clinical Trials for Lymphatic Anomalies
January
22
,
2024
5 Ways to Overcome Self-Defeating Thoughts
January
18
,
2024
Diagnosis for CLAs: Cyst Fluid Self-free DNA Analysis
January
4
,
2024
New RARE Helpline in Australia
December
22
,
2023
For CCLA: A Closer Look at Trametinib Treatment
December
22
,
2023
The Use of Alpelisib in Patients with Vascular Anomalies
December
19
,
2023
ARAF Mutation Reveals Treatable CCLA with MEK Inhibitor Magic!
December
14
,
2023
New Adult Center for CLAs in the UK!
December
12
,
2023
Navigating CLAs: A Glimpse into Modern Medical Treatments
December
6
,
2023
Unlocking the Mysteries of Vascular Malformations
November
30
,
2023
Sean's Journey with the CLA Community
November
30
,
2023
Bridging Hope and Science: Becky's Journey
November
20
,
2023
Giving Gratitude This Thanksgiving
November
16
,
2023
Libby's Journey with KLA: A Parent's Perspective on Genetic Testing and Hope
November
15
,
2023
Accessing Expert Care: A Daunting Task
November
9
,
2023
Mental Health Struggles and Strengths in Families
October
24
,
2023
The Hidden Costs of Delayed Rare Disease Diagnosis
October
16
,
2023
Copay Accumulator Programs Unveiled
October
11
,
2023
Understanding Lymphangioleiomyomatosis (LAM) and Generalized Lymphatic Anomaly (GLA)
October
11
,
2023
Calling all CLA Warriors and Advocates!
October
4
,
2023
What is pleural effusion?
About
Mission & Vision
Jana's Story
Board of Directors & Team
Medical & Scientific Advisory Council
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Annual Reports & Finances
Conditions We Cover
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Terminology
Complex Lymphatic Anomalies
About CLAs
Symptoms
CLA Diagnosis
Treatments
Isolated Lymphatic Malformations
About Isolated LMs
Symptoms
Diagnosis
Treatments
Genetics
Pregnancy & Prenatal Care
Family Planning
Prenatal Diagnosis & Fetal Care
Complications
Bone Involvement
Chiari
Chyle Leaks
Fluid Buildup (Effusions)
Infections
Lymphedema
Oral Health
Protein-Losing Enteropathy
Glossary
Patients & Caregivers
Finding a Physician
Support Programs
Daily Life
Living with a LM
Living with a CLA
Well-Being
Children
Teens
Adult
Caregivers
Patient Registry
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