See all the latest news, blogs and updates from the medical sector.
News
Inspirational author from Ireland
Geraldine, a determined MPS mother and writer, has published a book sharing her experience and insight into raising a child with a severe...
22/02/2021
News
MPS Society welcomes new UK Rare Diseases Framework
MPS Society welcomes new UK Rare Diseases Framework, a national vision to improve the lives of those living with rare diseases.
22/01/2021
Blog
Lockdown positivity
We asked you what you're doing to keep positive and stay healthy during lockdown this time round. The COVID-19 pandemic has affected...
15/01/2021
Condition
Treatment for Metachromatic Leukodystrophy (MLD) approved by the European Commission
MLD is a very rare, fatal genetic disorder caused by mutations in the ARSA gene which lead to neurological damage
22/12/2020
News
Frequently asked questions about the vaccination programme for COVID-19
The BIMDG has prepared these responses to frequently asked questions about the vaccine progamme for COVID-19.
18/12/2020
Blog
Daniella Vandepeer discusses her clinical trial experience
Daniella Vandepeer shares her experiences of family life on a clinical trial including her motivation for joining a trial, the difficulties the family faces and what she feels is important for others considering joining a clinical trial.
13/12/2020
Blog
Louise's story - The Big Give Christmas Challenge 2020
Meeting families in person has supported my learning about these conditions and my understanding about the challenges families face.
23/11/2020
News
Kelly Mills' charity appeal for MPS Society on Radio 4
Thank you so much to everyone who donated to the Radio 4 appeal after hearing Kelly talk about her daughter, Penny, and her experience of...
04/11/2020
Blog
So what does clinical trial support services actually mean? Lianne from RDRP reveals all
From clinical trials support and specialist medical communications to research and real-world evidence, Rare Disease Research Partners...
09/10/2020
Condition
AVROBIO announce collaborative research agreement with Manchester university for MPS II gene therapy
AVROBIO announce collaborative research agreement with Manchester university for MPS II gene therapy.
