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Rare Disease Day 2026

Advocacy
News

Update Following the MTA Committee Meeting on SMA Treatments

Advocacy
Treatments & Research

Newborn Screening : A proposal has now been submitted to the NIHR for review.

Advocacy
News

Steven’s Ziplining Challenge

Fundraising
image shows zip wire over a lake

When SMA hits the headlines: Holding space for parents and adults in our community

Advocacy
News
Headline reads: When SMA hits the headlines: Holding space for parents and adults in our community. Written by Luis Canto E Castro. Image shows Luis.

Newborn screening for SMA: a short overview

Advocacy
Information
News

Reflecting on recent news shared by Jesy Nelson

Advocacy
Information
News
Treatments & Research

UK Drug Deal with the US and Changes to NHS Medicine Costs 

Advocacy
News
Treatments & Research

Visit to the Wolfson Centre for Personalised Medicine: Advancing SMA Treatment Safety 

Treatments & Research
image shows two ladies in powerchairs wearing lab coats

Celebrating Mark Dearlove’s leadership and Welcoming Our New Chair of Trustees 

News