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March, 2026
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Rare Disease

Nikhil Ganjoo: Early Detection of Rare Diseases Through Newborn Genome Sequencing
Mar 13, 2026, 16:27 | Voices
Nikhil Ganjoo: Early Detection of Rare Diseases Through Newborn Genome Sequencing
Nikhil Ganjoo, Consultant Pediatrician at King's College Hospital London - UAE, Adjunct Clinical Assistant Professor…
Trulee Cardona: Hemophilia Care in Uzbekistan and Why It Matters
Feb 27, 2026, 18:19 | Voices
Trulee Cardona: Hemophilia Care in Uzbekistan and Why It Matters
Trulee Cardona, Marketing Committee Member at ALPFA, Drexel University Chapter- Association of Latino Professionals for…
Stacey McGeown: Rare Disease Awareness Day at QUB Marks the Start of Rare Disease Month
Feb 23, 2026, 14:45 | Voices
Stacey McGeown: Rare Disease Awareness Day at QUB Marks the Start of Rare Disease Month
Stacey McGeown, Co-Founder at EquiPath Analytics and Board Trustee at The Haemophilia Society, shared a…
Can we Boost Emicizumab Without Increasing Thrombosis Risk? - RPTH Journal
Feb 14, 2026, 16:56 | Voices
Can we Boost Emicizumab Without Increasing Thrombosis Risk? - RPTH Journal
RPTH Journal shared a post on LinkedIn: ''Can we boost emicizumab without increasing thrombosis risk?…
Miriam Mwachinga: Let’s Focus More on Rare Diseases and Their Impact on Quality of Life
Feb 12, 2026, 11:52 | Insight
Miriam Mwachinga: Let’s Focus More on Rare Diseases and Their Impact on Quality of Life
Miriam Mwachinga, General Practitioner, Internal Medicine, Medical Affairs at Healthcare Industry, Pharmaceutical Ind, shared on…
Abhishek Kumar: Next-Generation Treatments Transforming Polycythemia Vera Care
Feb 10, 2026, 16:07 | Insight
Abhishek Kumar: Next-Generation Treatments Transforming Polycythemia Vera Care
Abhishek Kumar, Lead Analyst at DelveInsight Business Research LLP, shared a post on LinkedIn: ''Polycythemia…
300 Million People, One Global Community - Rare Disease Day
Feb 3, 2026, 14:54 | Voices
300 Million People, One Global Community - Rare Disease Day
Rare Disease Day shared a post on LinkedIn։ ՛՛300 million people. One global community. Rare…
Nancy Di Salvo on Amplifying Rare Disease Voices Through Partnership
Jan 29, 2026, 13:28 | Voices
Nancy Di Salvo on Amplifying Rare Disease Voices Through Partnership
Nancy Di Salvo, Director of International Affairs at GBS-CIDP Foundation International, reposted from PPTA Europe on…
Seth D Ginsberg: Last Month, Something Meaningful Happened in Tokyo
Jan 24, 2026, 14:47 | Voices
Seth D Ginsberg: Last Month, Something Meaningful Happened in Tokyo
Seth D Ginsberg, Co-Founder and President of Global Healthy Living Foundation, shared on LinkedIn: ''Last…
Akshat Jain: Key Takeaways from ASH2025: Transformative Therapeutics, Global Insight, and Compassionate Innovation
Dec 10, 2025, 04:57 | Voices
Akshat Jain: Key Takeaways from ASH2025: Transformative Therapeutics, Global Insight, and Compassionate Innovation
Akshat Jain, Hematology Pediatric Workforce Task Force at American Society of Hematology, shared on LinkedIn: "What…
Inaugural Global Rare Impact Award: Sanofi Honors The 3 Remarkable Pioneers
Dec 4, 2025, 23:40 | Insight
Inaugural Global Rare Impact Award: Sanofi Honors The 3 Remarkable Pioneers
Ekaterina Kazakova, Medical Executive at Sanofi, reposted from Alaa Hamed on LinkedIn: ''Proud to share this…
Arsène Mekinian: Corticosteroid Tapering Strategies Show No Difference
Dec 2, 2025, 09:51 | Science
Arsène Mekinian: Corticosteroid Tapering Strategies Show No Difference
Arsene Mekinian, Professor of Medicine at Sorbonne University, President of Santé Arménie, posted on LinkedIn: ”Corticosteroid…
ERIN Webinar Recording Now Available on the EHC YouTube Channel
Dec 1, 2025, 09:32 | Organizations
ERIN Webinar Recording Now Available on the EHC YouTube Channel
European Haemophilia Consortium (EHC) posted on LinkedIn: ''European Rare and Inhibitor Network (ERIN) Webinar recording…
Purpura Fulminans - A Rapidly Progressive Coagulopathic Emergency Across The Lifespan
Nov 27, 2025, 05:03 | Science
Purpura Fulminans - A Rapidly Progressive Coagulopathic Emergency Across The Lifespan
Indunil Karunarathna, Consultant Anaesthetist, Head of the Department, T H Polonnaruwa, Ministry of Health, Sri…
Shantelle Kuria - von Willebrand Disease: Complex Protein, Difficult Market
Nov 27, 2025, 04:58 | Insight
Shantelle Kuria - von Willebrand Disease: Complex Protein, Difficult Market
Shantelle Kuria, Master of Science in Molecular Medicine at Imperial College London, posted on LinkedIn:…
European Haemophilia Consortium: Day 1 At EHC Conference 2025 In Vienna - What A Start
Oct 6, 2025, 07:39 | Organizations
European Haemophilia Consortium: Day 1 At EHC Conference 2025 In Vienna - What A Start
  European Haemophilia Consortium (EHC) posted on LinkedIn: ''Day 1 at EHC Conference 2025 in…
NBDF: Proud to See Our Own Teri F Willey Representing the Foundation in the Funding Rare Disease Research Webinar
Oct 4, 2025, 09:55 | Voices
NBDF: Proud to See Our Own Teri F Willey Representing the Foundation in the Funding Rare Disease Research Webinar
National Bleeding Disorders Foundation (NBDF) reposted from Fondation Ipsen on LinkedIn: ''NBDF is proud to…
WFH: Hemophilia Innovations from Factor Therapy to Gene Therapy
Sep 21, 2025, 07:47 | Organizations
WFH: Hemophilia Innovations from Factor Therapy to Gene Therapy
World Federation of Hemophilia (WFH) shared on X: ”Hemophilia has led rare disease innovation—from factor…
Maxime Dely: The Vital Role of Plasma-Derived Clotting Factors in Rare Disease Care
Sep 6, 2025, 12:46 | Voices
Maxime Dely: The Vital Role of Plasma-Derived Clotting Factors in Rare Disease Care
Maxime Dely, Sales and Application Specialist in Therapeutic Apheresis and Cell Therapy, has shared a post…
New Study Featured by Rare Disease Advisor Reveals Quality-of-Life Challenges in Hemophilia
Sep 5, 2025, 10:59 | Insight
New Study Featured by Rare Disease Advisor Reveals Quality-of-Life Challenges in Hemophilia
  Rare Disease Advisor posted on LinkedIn: ''Regardless of treatment regimen or disease severity, patients…
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