Euro Hereditary Spastic Paraplegia

Euro Hereditary Spastic Paraplegia EURO HSP is a federation of national groups linked to a rare disease called hereditary spastic paraplegia or Strümpell-Lorrain disease. The federation was formed during the Rare!

Project. Together by EURORDIS

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Healthcare needs, expectations, utilization, and experienced treatment effects in patients with hereditary spastic parap...
25/06/2021
Healthcare needs, expectations, utilization, and experienced treatment effects in patients with hereditary spastic paraplegia: a web-based survey in the Netherlands

Healthcare needs, expectations, utilization, and experienced treatment effects in patients with hereditary spastic paraplegia: a web-based survey in the Netherlands

A questionnaire among 194 adult persons with HSP in the Netherlands, of which 166 returned a fully completed version. After applying predefined exclusion criteria, 109 questionnaires from persons with pure HSP were analysed.

This work was supported by a PhD Grant to the first author from the HAN University of Applied Sciences. This investigation was further supported by unrestricted grants from #MerzPharma and #IpsenPharma. #BvdW and #AG are member of the #EuropeanReferenceNetwork for #RareNeurologicalDiseases

A special thanks goes to #HermienRemmelink
Advocacy patients! 🙏🙏

Background We aimed to identify healthcare needs, expectations, utilization, and the experienced treatment effects in a population of Dutch patients with hereditary spastic paraplegia (HSP). Methods We distributed an online questionnaire among 194 adult persons with HSP in the Netherlands, of which....

Only a few more days to go until entries close for this new international #HSP #research award. Share your treatment/the...
25/06/2021
New HSP Research Award

Only a few more days to go until entries close for this new international #HSP #research award. Share your treatment/therapy work in HSP with the HSP community, both those with HSP and researchers. #RareDisease #HereditarySpasticParaplegia https://hspgroup.org/new-hsp-research-award/

There is a new award for HSP researchers, being funded by EuroHSP, the Adolf Strümpell Prize with a value of 2,500 Euro. It is a best paper award to recognise research achievements in therapy/treatment for…

Hereditary Spastic Paraplegia &Primary Lateral SclerosisVirtual MeetingMay 8-9, 2021 From 9:00 AM – 4:00 PMThis conferen...
27/04/2021

Hereditary Spastic Paraplegia
&
Primary Lateral Sclerosis
Virtual Meeting
May 8-9, 2021
From 9:00 AM – 4:00 PM

This conference available in English and French is for patients diagnosed with hereditary spastic paraplegia (HSP), patients with primary lateral sclerosis (PLS), general practitioners, and neurologists. In this two-day meeting well-known neurologists and researchers working on HSP and PLS will give information regarding these two conditions. A world champion wheelchair motocross athlete also a HSP patient will share her story, and the participants will have opportunities to ask our speakers questions.

http://hspplscanada.ca/events/hsp-pls-canada-virtual-conference.

There is a new award for HSP researchers, being funded by EuroHSP, the Adolf Strümpell Prize with a value of 2,500 Euro....
14/04/2021
New HSP Research Award

There is a new award for HSP researchers, being funded by EuroHSP, the Adolf Strümpell Prize with a value of 2,500 Euro. It is a best paper award to recognise research achievements in therapy/treatment for HSP. This is an international award, with an international panel of judges. The award winner will present their work at the 2021 Tom Wahlig Foundation symposium, where the award will be presented.
https://hspgroup.org/new-hsp-research-award/

There is a new award for HSP researchers, being funded by EuroHSP, the Adolf Strümpell Prize with a value of 2,500 Euro. It is a best paper award to recognise research achievements in therapy/treatment for…

New meeting with the Euro Hereditary Spastic Paraplegia  associations!  It is always very exciting to share works and pr...
21/03/2021

New meeting with the Euro Hereditary Spastic Paraplegia associations!
It is always very exciting to share works and projects for the European Hereditary Spastic Paraplegia community.

#Austria, #Germany, #Holland, #France, #Norway, #Denmark, #Italy, #England.

WEBINAR ON THE DAY OF RARE DISEASES  For Rare Disease Day 2021 #RareDiseaseDay do not miss the #webinar organized by the...
22/01/2021
Welcome! You are invited to join a webinar: 'Improving care of rare disease patients in Europe - Rare Disease Day 2021'. After registering, you will receive a confirmation email about joining the webinar.

WEBINAR ON THE DAY OF RARE DISEASES

For Rare Disease Day 2021 #RareDiseaseDay do not miss the #webinar organized by the Ern-Rnd European Reference Network for Rare Neurological Diseases #ErnRnd "Improving care for rare patients in Europe" covering different perspectives: from clinical to point of view of the patient.

📆 When? February 23
Sign up 👉http: //bit.ly/2Lwrmj6

Excellent line-up of speakers.

🔵 Holm Graessner, coordinator of the European Reference Network for Rare Neurological Diseases (ERN-RND)
🟣 Donna Walsh, executive director of the European Federation of Neurological Associations (EFNA)
🟢 Sophie Bernichtein, project manager of BRAIN-TEAM in France
🔴 Tobias Mentzel, patient advocate at ELA Germany
🔵 Maria Judit Molnar, Professor of Neurology and Director of the Institute of Genomic Medicine and Rare Disorders of the Semmelweis University, Hungary

Topics about the care of rare disease patients in Europe will be discussed, focusing, in particular on rare neurological diseases and providing different perspectives: from the doctor to the patient perspective and from a European to a more local level with examples from France, Germany and Hungary.

What are the opportunities and challenges? Participate to find out.

It's also a great way to celebrate Rare Disease Day 2021 and the 300 million people living with a #rared disease around the world!

Please, share the event! 🙂🙏

We are pleased to invite you to this ERN-RND webinar on "Improving care of rare disease patients in Europe" as part of the Rare Disease Day 2021 campaign. Rare Disease Day takes place every year on the last day of February with the aim of raising awareness of rare diseases across the world throughou...

EURO HSP is a federation of national groups linked to a rare disease called hereditary spastic paraplegia or Strümpell-L...
22/12/2020

EURO HSP is a federation of national groups linked to a rare disease called hereditary spastic paraplegia or Strümpell-Lorrain disease. The federation was formed during the Rare Project together by EURORDIS.

We all work together with the same goal, to find a cure for spastic paraparesis. Austria, Germany, France, England, Holland, Denmark, Spain, Italy, a great teamwork, the same goals !!

On  behalf of Euro-HSP we would like to ask for your help. Two research  networks, with which Euro-HSP closely collabora...
16/12/2020
Survey: Early disease symptoms in hereditary spastic paraplegia (HSP)

On behalf of Euro-HSP we would like to ask for your help. Two research networks, with which Euro-HSP closely collaborates, would like to conduct a survey among patients with HSP.
The TreatHSP project is a collaborative effort between neurologists and researchers around the world. The project aims to develop new treatment options for HSP by studying them from the clinical to the molecular level.
The PROSPAX network, which works very closely with researchers from the TreatHSP project, would like to study the progression of two conditions: HSP type SPG7 and ARSACS.
Both projects need input from people living with HSP for their research and therefore ask anyone with any type of hereditary spastic paraplegia (HSP) to fill in two brief online-surveys. Each of the surveys can be completed in about 5 minutes. Parents can fill in the surveys for their children.

Link to the TreatHSP survey: https://www.surveymonkey.de/r/treatHSP
With this survey, researchers would like to learn about the very first symptoms of HSP. This will help clinicians to recognise HSP earlier and make a timely diagnosis.

Link to the PROSPAX survey: https://www.surveymonkey.co.uk/r/7MJLRKR
The researchers involved in the PROSPAX project are very keen to ensure that they focus their research on what the important challenges are for people living with HSP or spastic ataxia. They will use the information gathered by this survey to plan their research.
On behalf of Euro-HSP and the TreatHSP and PROSPAX research team, we thank you in advance for your assistance in distributing both surveys and for your important contribution to this research project.
Both surveys will remain open until 31 January 2021.
Next week we will have all the other languages ready for the survey, French, Italian, German, Dutch and French. A person should complete the survey in their native language.
THANKS FOR YOUR COLLABORATION!

Take this survey powered by surveymonkey.com. Create your own surveys for free.

💻 Next #ernRND joint #webinar - #neurorehabilitation & #paediatric foci - with ERN EURO-NMD and the European Academy of ...
02/10/2020

💻 Next #ernRND joint #webinar - #neurorehabilitation & #paediatric foci - with ERN EURO-NMD and the European Academy of Neurology

📚 Treatment of spasticity in Hereditary Spastic Paraplegia (HSP) & leukodystrophies by Annemieke Buizer, Professor for Rehabilitation Medicine at the Amsterdam Research Institute for Movement Sciences, the Netherlands

📅 6 October 2020, 3-4pm CET

✏️ Sign up 👉 https://bit.ly/3hJBnUH

Association ELA SPATAX Euro Hereditary Spastic Paraplegia Deutsche Gesellschaft für Neurologie e.V. - DGN Deutsche Gesellschaft für Neurorehabilitation - Kongress Österreichische Gesellschaft für Neurologie Sociedad Española de Neurología Pediátrica ELA Deutschland e.V. Great Ormond Street Hospital and Children's Charity SIRN - Società Italiana di Riabilitazione Neurologica SIRia Società Italiana di Riabilitazione
Società Italiana di Pediatria Ospedale Pediatrico Bambino Gesù Hospital Sant Joan de Déu Barcelona Vall d'Hebron Barcelona Hospital Campus


#rarediseases #neurology #physiotherapy #ShareCareCure

💻 Upcoming #ernRND joint #webinar with ERN EURO-NMD and the European Academy of Neurology  📚 Hereditary Spastic Parapleg...
17/09/2020

💻 Upcoming #ernRND joint #webinar with ERN EURO-NMD and the European Academy of Neurology

📚 Hereditary Spastic Paraplegia - clinical disease course

👩‍⚕️ Rebecca Schüle Freyer, Uniklinikum Tübingen, Germany

📅 1 October, 3-4pm CET

✏️ Sign up here👉 https://bit.ly/303wmAb

💡 Rebecca Schüle is a neurologist and associate professor at the University Tübingen Germany and expert on Hereditary Spastic Paraplegia (HSP). She is leading the research group "Genomics of rare movement disorders" at the Hertie Institute for Clinical Brain Research. She is also the coordinator of the network TreatHSP.net

Euro Hereditary Spastic Paraplegia Deutsche Gesellschaft für Neurologie e.V. - DGN Österreichische Gesellschaft für Neurologie Uni-Klinikum Erlangen SPATAX Semmelweis Egyetem Ataxia UK

Yesterday was the first #ernRND ePAG #patient advocates meeting after the summer break! 🙂  European Huntington Associati...
08/09/2020

Yesterday was the first #ernRND ePAG #patient advocates meeting after the summer break! 🙂 European Huntington Association ELA Deutschland e.V. Association ahc18+ ,EURORDIS - European Rare Diseases Organisation

#ERNs are patient centered networks so collaboration with patients & patient representatives is key 🔑

#patientadvocacy #StrongerTogether #Rarediseases

💻📚#ernRND has plenty of educational #webinars on rare neurological diseases scheduled up until the rest of 2020, adult-p...
04/09/2020

💻📚#ernRND has plenty of educational #webinars on rare neurological diseases scheduled up until the rest of 2020, adult-paediatric-neurorehabilitation foci, save the dates & sign up now!

👉http://bit.ly/33mMY4C

#Neurology #raredisease #ShareCareCure

4th #EAN Task Force for Rare Neurological Diseases online Teaching Course is next week on 8 September!Some of the topics...
03/09/2020

4th #EAN Task Force for Rare Neurological Diseases online Teaching Course is next week on 8 September!

Some of the topics on the agenda:

📚 #neurorehabilitation in RNDs
📚 new genetic therapies
📚 updates on genetic Autosomal Recessive Ataxias
📚 updates on genetic Autosomal Dominant Ataxias
📚 Huntington's disease
📚 update on rare forms of dementia

Knowledge sharing is essential to educate the next generation of clinicians & researchers in rare disorders. This will support patients and their families in getting a faster and accurate diagnosis as well as treatment and care.

Sign up for free 👉https://bit.ly/358alTA

Deutsche Gesellschaft für Neurologie e.V. - DGN SIRN - Società Italiana di Riabilitazione Neurologica Österreichische Gesellschaft für Neurologie Sociedad Española de Neurología (SEN) European Academy of Neurology European Brain Council European Federation of Neurological Associations European Huntington Association Rare Dementia Support Euro Hereditary Spastic Paraplegia SPATAX National Ataxia Foundation Ataxia UK Semmelweis Egyetem

Greetings to all,The  Ern-Rnd European Reference Network for Rare Neurological Diseaseswww.ern-rnd.eu #Ernrdn is organiz...
29/06/2020
Welcome! You are invited to join a webinar: 'Environmental modifiers in Hereditary Spastic Paraplegia'​ by Pauline Lallemant-Dudek. After registering, you will receive a confirmation email about joining the webinar.

Greetings to all,
The Ern-Rnd European Reference Network for Rare Neurological Diseases
www.ern-rnd.eu

#Ernrdn is organizing three upcoming webinars with a focus on neurorehabilitation on HSP (information below),

09. July - 'Environmental modifiers in Hereditary Spastic Paraplegia' - Pauline Lallemant-Dudek - Hospital A. Trousseau, Paris, France
Sign up here.
https://us02web.zoom.us/webinar/register/WN_m3b0OzgxRgeBfq6ruwyLiA

14. July - 'Gait rehabilitation in people with hereditary spastic paraplegia' - Jorik Nonnekes - Radboud University Medical Center, Nijmegen, the Netherlands & 'Respiratory physiotherapy in parkinson's plus syndromes' - Martin Srp - Charles University and General University Hospital, Prague, Czech Republic
Sign up here.
https://us02web.zoom.us/webinar/register/WN_P5JS4_Q_S3SUyYn5HHZVew

06. Oct. - 'Treatment of spasticity in HSP and leukodystrophies' (neurorehabilitation and paediatric focus)- Annemieke Buizer/Laura Bonouvrié - Amsterdam University Medical Center, the Netherlands
Sign up here.

The full webinar schedule which is regularly updated can be found here.
http://www.ern-rnd.eu/education-training/webinars/

Educational webinars on Neurorehabilitation jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN). The speaker is specialist in physical medicine and pediatric rehabilitation....

Hereditary Spastic Paraplegia is a rare disease, and like all rare diseases it needs information, studies, research cent...
07/06/2020
What are ERNs and how do they work?

Hereditary Spastic Paraplegia is a rare disease, and like all rare diseases it needs information, studies, research centers to be online, to share, to care, to cure.
For this reason, the Ern-European Reference Network was born. Look at the video below.
Ern-Rnd European Reference Network for Rare Neurological Diseases
https://www.youtube.com/watch?time_continue=1&v=gbZpSbjcOiQ&feature=emb_logo

http://www.ern-rnd.eu/
http://www.ern-rnd.eu/education-training/webinars/

Video made by the European Union 2017. https://ec.europa.eu/health/ern/overview_en

Untitled Album
05/06/2020

Untitled Album

Euro Hereditary Spastic Paraplegia
05/06/2020

Euro Hereditary Spastic Paraplegia

Vienna 2019
03/06/2020

Vienna 2019

Euro Hereditary Spastic Paraplegia
03/06/2020

Euro Hereditary Spastic Paraplegia

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