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
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