Superficial Siderosis Research Alliance

Superficial Siderosis Research Alliance Living with Superficial Siderosis™ is the digital information publication of the Superficial Siderosis Research Alliance.

The SSRA is a 501(c)(3) nonprofit whose mission is advocacy, education, and fundraising for medical research.

02/28/2026

Every year on the last day of February, awareness is raised for all babies, children, youngsters and adults diagnosed with a rare condition

At morrello, and especially our paediatric branch, morrello mini, we support several families who are affected by a rare condition.
In recent years, genetic testing has ensured that many children have received the correct diagnosis, enabling the people around them to support them in the best way possible.

Our paediatric therapists work with many babies and children with a variety of syndromes as well as spinal muscular dystrophy.

They are all inspirational and we want them and their families to know that we see them 💜

Rare Disease Day is a reminder that “rare” doesn’t mean small. It means too many people are still searching for answers,...
02/28/2026

Rare Disease Day is a reminder that “rare” doesn’t mean small. It means too many people are still searching for answers, support, and effective treatments.

At the Superficial Siderosis Research Alliance, we exist for the patients and families living with Superficial Siderosis. This rare neurological condition can steal hearing, balance, mobility, and so much more. We’re working to change that through research, clinical collaboration, and patient education.

Today, we in the Superficial Siderosis community stand with the entire rare disease community:

To raise awareness
To speed up diagnosis
To fund research that leads to real therapies
To ensure no family feels alone

If you want to help, you can share this post and start a conversation, begin today, and keep the dialogue going every day!

02/28/2026

This Rare Disease Day (today - 28 Feb 2026) together with Genetic Alliance UK , we're calling on the governments of the UK deliver and:

1. Deliver a UK-wide map of rare conditions – The four UK nations must urgently fund comprehensive rare condition registries and work in partnership to map all 7,000 rare conditions.

2. Close the evidence gap through fair research investment – Government and research funders must correct the imbalance in research investment and reform evidence standards to recognise that uncertainty is inherent to rare conditions.

3. Mandate system-wide accountability for rare conditions – Healthcare systems must stress-test policies and commissioning decisions against the realities of low-prevalence conditions, including systematic auditing to identify gaps.

4. Embed rare conditions into mainstream healthcare delivery – Current UK healthcare reforms present an opportunity to fully integrate rare condition care into routine service provision.

5. Commit to a bold successor to the UK Rare Diseases Framework – UK governments must commit to a long-term successor with clear targets, adequate funding, and measurable improvements.

Learn more about the recommendations in the policy report: 'Equity for Rare: Delivering fairer healthcare systems for people with rare conditions' here: https://bit.ly/4u2EZHl

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