Mildred Lundgren: These 5 Proposals Are A Clear Road Map for The Future And We Support Them Wholeheartedly
Mildred Lundgren, Chairman of the Board at HHT Sweden, shared on LinkedIn:
”We at HHT Sweden applaud this post and stand behind every single point!
For those of us struggling with a rare diagnosis like HHT (Hereditary Hemorrhagic Telangiectasia), faster diagnosis is not just a matter of better quality of life – it’s crucial for preventing life-threatening complications such as stroke and bleeding.
These five proposals are a clear road map for the future and we support them wholeheartedly.
We look forward to the Government now prioritising these measures and securing the funding required for the strategy to become a reality.”
Quoting Rare Diseases Sweden‘s post:
”Time for a focus on rare health conditions!
In Sweden, 500,000 people live with a rare health condition.
Despite this, they often have to wait years for a diagnosis, face regional differences in care and do not have access to treatments in time.
The government has promised a national strategy – but without money, it risks becoming an empty symbolic act.
We know that long-term investments work – cancer care is the proof.
Now the same effort is required for rare diagnoses.
Here are five suggested measures that would make a big difference for patients with rare health conditions:
- SEK 500 million/year for faster diagnosis and care.
- A national coordinator who drives the strategy forward.
- Better support for patient organisations – so every voice is heard.
- Strengthened role for the Centre for Rare Diseases.
- Faster access to new treatments.
It is time to move from words to action.”
Read the full article here.
Article: Time to focus on rare health conditions
Stay updated with Hemostasis Today.
-
Oct 11, 2025, 09:06Natalia Peres Martinez - Surgical Bleed: Replacing Gut Feeling With Guided Thinking
-
Oct 11, 2025, 09:00Muhammad Ali - Hematology In Pakistan: The Silent Revolution In Diagnosis And A Blueprint For Growth
-
Oct 11, 2025, 08:50Robert Zeiser: New Insights and Timeless Lessons in Transplantation
-
Oct 11, 2025, 08:39Mildred Lundgren: These 5 Proposals Are A Clear Road Map for The Future And We Support Them Wholeheartedly
-
Oct 11, 2025, 08:33RPTH Journal: Does Fasting Affect Anticoagulant Therapy? - The Effects Of Fasting During Ramadan
-
Oct 12, 2025, 10:14Hatim Lokhandwala: Landmark HI-PRO Trial Redefines VTE Treatment Guidelines
-
Oct 11, 2025, 18:47Endovascular Today: SYMPHONY-PE Trial and Advances in Pulmonary Embolism Treatment
-
Oct 11, 2025, 08:49Rodrigo Assar: We Are Pushing the Boundaries by Using Computational Approaches
-
Oct 11, 2025, 08:48Deborah Wild: Thrilled to See GeneVentiv Selected for The NIH NHLBI Catalyze Program
-
Oct 11, 2025, 08:34Ivo Francischetti and Colleagues on Glycoprotein VI Contributing to Platelet Activation in HIT
-
Oct 10, 2025, 12:25Robert Lewis: T Cells Are Wonderful - But They Can't Do Everything
-
Oct 9, 2025, 13:03Peter Graves: When the Bleeding Does Not Stop
-
Oct 8, 2025, 12:44Bobur Kholikov: Thrombosis Diagnostics with YHLO
-
Oct 7, 2025, 13:06Bobur Kholikov on iFlash Thrombosis Panel – D-Dimer
-
Oct 7, 2025, 03:502025 Nobel Prize: A Milestone for Autoimmunity Research - Awarded to Mary E. Brunkow, Fred Ramsdell and Shimon Sakaguchi
-
Oct 11, 2025, 08:57Jeff June - Seeing The Invisible: How Spatial Biology Is Opening A New Chapter In Stroke Care
-
Oct 11, 2025, 08:11Khaled Musallam: Honored to Be Featured for The 7th Year in A Row in The World’s Top 2% Most-Cited Scientists
-
Oct 11, 2025, 08:07Britta Diebel: This Has Been An Intense, Good Week, Although IPAW Actually Lasts All Year Long
-
Oct 10, 2025, 03:10Marilena Vrana: Plasma-Derived Medicines Are a Clear Example of Why A One-Size-Fits-All Approach Won’t Work
-
Oct 10, 2025, 03:07Nancy Di Salvo: It's IPAW 2025, How Could I Not Take a Moment to Thank Every Single Plasma Donor Out There?