Events

In 1906 the Spanish researcher Santiago Ramón y Cajal won the Nobel prize for discovering and describing a new type of cells – neurons. He was the first neuroscientist and he taught us that neural tissue is made of millions of branched synaptic connections. The Spanish HSP group AEPEF initiated to promote his annual Memorial Day October 17 as the world wide day for raising awareness for inherited spastic paraplegias and primary lateral sclerosis – the groups of rare diseases which unite us in destiny.

We shall use this day for establishing worldwide connections just like neurons connect. We shall use the symbol of connected fingers for uniquely communicating our desire for finally obtaining cure for inherited loss of neural connections. We ask everybody to support us on that day – support our activities, support our research, support our hope and support us in translating our connected fingers into cure for neural connections.  

We are pleased to share the success of the Euro-HSP General Assembly, held in person in August 2025 in Copenhagen. It was an inspiring and productive gathering, bringing together representatives from across Europe to exchange ideas, share progress on ongoing projects, and define our common goals for the future.

Among the many valuable outcomes, three key developments stand out:

Strengthening the Bridge Between Research and Industry
We are now actively linking our research projects to industrial partners, fostering collaboration that will accelerate innovation and the development of new therapies for Hereditary Spastic Paraplegia (HSP). This marks a significant step toward translating scientific discovery into tangible benefits for people living with HSP.

Establishment of HSP World Day 

In collaboration with numerous HSP patient associations worldwide, we are proud to announce the creation of an HSP World Day. This global initiative will raise awareness, foster international solidarity, and give visibility to the challenges and hopes of the HSP community.

New Fundraising Initiative via Life4HSP

To support our expanding activities and projects, we are preparing to launch a dedicated fundraising campaign for Euro-HSP on the Life4HSP platform. This will enable us to finance our research projects and strengthen our European network.

We thank all participants  for their valuable contributions and ongoing commitment. The future of HSP research and advocacy is stronger when we Work Together.

Stay tuned for more updates and join us on this journey!

The Spastic Paraplegia Foundation (SPF) is the voice of HSP and PLS patients in North America. Lori Renna Linton - an Euro HSP Suff Support member - got invited for starting their SPF-talks in 2024. We are very pleased about this cooperation and invite also all European patients and family members for joining the trans-atlantic talk on Sunday February 4 (https://sp-foundation.org/get-involved/spf-talks.html; preregistration required).