About nadzor
This author has yet to write their bio.
Meanwhile lets just say that we are proud nadzor contributed a whooping 41 entries.
Entries by nadzor
SMA Awareness NFT Art Gallery!
September 1, 2021 by nadzorEducational Radio Program for NMD Community 2021
We have successfully launched a new program called Educational Radio Program for NMD Community 2021. Find more on host countries, show dates, and much more: Educational Radio Program for NMD Community 2021
EAMDA announces partnership with ECMTF
We are pleased to announce the partnership between EAMDA and ECMTF (European Charcot Marie Tooth Federation), established through a signed Memorandum of Cooperation, for the benefit of the NMD community across Europe. The European CMT Federation is a voluntary non-profit federation registered in Belgium, formed by national organizations supporting people living with Charcot Marie Tooth […]
ProDGNE Kick-Off webinar
The ProDGNE consortium is pleased to invite you to the ProDGNE Kick-Off Webinar. In this webinar we will present ProDGNE, a 3 year transnational pre-clinical research project which brings together patients and researchers from Europe and Canada to develop an innovative therapeutic compound to treat GNE Myopathy (GNEM), a rare genetic muscle disease affecting young […]
SMA NBS Alliance published whitepaper
SMA NBS Alliance published a whitepaper and call of action on the need for newborn screening for Spinal Muscular Atrophy (SMA). More information you can find on https://www.sma-screening-alliance.org/
EAMDA has 2 new advocacy experts
EAMDA has 2 new advocacy experts in medicines research, development and therapeutic innovation! Jana Popova, EC Member of EAMDA and member of the Bulgarian Association for Neuromuscular Diseases and Arabela Acalinei, secretary of EAMDA and President of Neuro Move CMT Association in Romania are both graduates of the European Patients’ Academy on Therapeutic Innovation (EUPATI). […]
New disease awareness website ‘Duchenne and you’
There is an updated version of ‘Duchenne and you’ website available for you to visit at https://duchenneandyou.eu/ Welcome to visit the site and get useful information on DMD (articles & videos included).
EAMDA established secretariat office
We have established secretariat office to provide solution on expansion of our activities. In that way, we believe to make our organization more recognizable and accessible to the community. For secretariat office contacts please check the following link http://www.eamda.eu/secretariat/
ERN on priorities and contra-indications for COVID-19 vaccinations
European Reference Networks (ERNs) is formed by experts in rare diseases. All ERNs provided their opinion on the priorities and contraindications for patients with a rare disease within their network. The results are summarized in this document and were discussed during the internal ERN-Coordinator group meeting of January 27th, 2021. For more please read the […]
Contact
EAMDA
Linhartova 1
SI-1000 Ljubljana
SLOVENIA
tel: +38614720556
fax: +38614328142
mail: info@eamda.eu
Bank details
IBAN: SI56 0201 1026 2111 086
SWIFT/BIC: LJBASI2X
VAT No.: 64611400
Bank name & address:
Nova Ljubljanska banka d.d.
Trg republike 2
SI-1520 Ljubljana
SLOVENIA