News & Events
3RD ENMD CONGRESS
E-HEALTH & INNOVATION TO OVERCOME BARRIERS IN NEUROMUSCOLAR DISEASES
Why to attend it?
This 3rd edition of the e-NMD Congress, E-health & Innovation to overcome barriers in Neuromuscular Diseases, follows the previous one, expected to be in Pisa 30-31 October 2020, actually completely virtual at that time. This the reason why we now propose again Pisa for this edition, hopefully in a hybrid form. The main theme chosen for this year focuses on “Remote Monitoring”, an emerging theme within the e-health world, now critically figured out from the Covid-19 era and for sure a topic of interest in the wider field of assistive technology & innovation for NMD.
International Plasma Awarness Week
Calling on EU Policymakers to Increase Plasma Donations
IPAW raises global awareness about Europe’s need to increase plasma collection
Brussels, (October 4, 2021) — The Plasma Protein Therapeutics Association (PPTA) is marking the 9th annual International Plasma Awareness Week (IPAW), October 4-8, by increasing awareness and understanding about the importance of plasma, particularly the urgent need to increase plasma donations in the European Union, while also recognizing and thanking plasma donors who save and improve the lives of patients who rely on plasma for their therapies. Considering the revision of the European blood and tissues and cells legislation, PPTA calls on policymakers and regulators throughout Europe to strengthen its legal framework to benefit plasma donations for plasma-derived medicines and encourage new approaches that increase the collection of plasma across the European Union.
Plasma — the straw-colored, liquid portion of blood — contains proteins necessary for carrying out critical functions in the human body, such as antibodies to fight diseases and clotting factors to regulate bleeding. If a person has insufficient levels of any one plasma protein, his/her body cannot carry out these vital functions, causing a variety of chronic and life-threatening medical conditions.Plasma donation requires commitment from the donor, as it can take more than one hour per donation, and it can be donated more often than whole blood. The foundation of safe plasma therapies is a regular healthy plasma donor population.
Plasma collections declined nearly 20 percent last year compared to 2019 due to the COVID-19 pandemic and appear to still be down this year. Considering the complex manufacturing of plasma-derived therapies can take 7-12 months, any decline in plasma donations could impact patients’ ability to access their lifesaving therapies, ultimately jeopardizing their health.
“300,000 patients across Europe rely on plasma-derived medicinal products (PDMPs), which can only be made out of human plasma” said Maarten Van Baelen, Executive Director PPTA Europe. “However, the EU still relies for 30% of its plasma on the United States. It is up to policymakers to remove barriers that limit opportunities for committed and healthy adults to donate their plasma and to address Europe’s reliance on plasma from third countries. We should all work together towards a broader European plasma donation ecosystem. ”
Learn more about the importance of plasma and plasma-derived medicines by visiting and supporting www.ItsInUsAllToSaveALife.org
The Plasma Protein Therapeutics Association (PPTA –www.pptaglobal.org) is the global industry trade association with a strong European presence representing the private sector manufacturers of PDMPs and privately-owned plasma donation centres, including more than 150 centres in Europe. PPTA is steadfast in its mission to promote the availability of and access to safe and effective plasma protein therapies for patients worldwide.
World blood donor day
EPODIN is now member of EFNA - European Federation Of Neurological Associations
EPODIN is now member of EFNA – European Federation Of Neurological Associations
EPODIN strives for a close collaboration between its members, European institutions and organizations. By connecting them and mobilising the rare immune-mediated peripheral neuropathies community, EPODIN aim to strengthens patient’s voice, shapes research, policies and services for patients and their families.
Check out more at https://www.efna.net/members/epodin/
New EPODIN website
EPODIN has a new website where news and events will be posted in order to keep you up to date. Stay tuned 🙂