The SSIEM Rome 2016 report, made by our volunteer Maria Monticelli and originally in english, is now available in spanish.
Translation was done by Maria Antonia Vilaseca (Guia metabólica,Hospital Sant Joan de Deu, Barcelona, Spain).
Access it at HERE
Thank you so much Maria Antonia! Gracias Maria Antonia!
The European Medicines Agency (EMA) and the Food and Drug Administration (FDA, USA) have been collaborating for several years on the field of Rare Diseases. But recently, this bond has been reinforced and a new cluster is being set up.
What do you know about the exisiting collaboration projects between EMA and FDA focused on RARE Diseases and Patient engagement?
Find out what is underway at http://bit.ly/2eofon7
"Nothing about Us,without Us!"
The “Letter for Public Participation in Health" is an initiative of the portuguese civil society that reinforces participatory democracy in Portugal.
This iniciative has been signed and suported by 72 patient associations and by several important characters in the portuguese panorama. The “Letter for Public Participation in Health" aims to fill an exisitng gap by bringing the patient to the centre of medical decisions.
In RARE Diseases, such as CDG, patient and families are the true experts, thus it is very important to give them the Voice they deserve and need.
For a fairer, high quality heath system for ALL and made by ALL. Sign the petition for OUR Health!#MaisParticipaçaoMelhorSaúde http://bit.ly/2etCPLv
"Nada sobre Nós, sem Nós!"
A “Carta para a Participação Pública em Saúde” é uma iniciativa que reforça a Democracia Participativa em Portugal.
Esta iniciativa da sociedade civil que conta com a subscrição e apoio de 72 associações de pacientes portuguesas e de várias personalidades importantes na sociedade portuguesa, tem como objectivo trazer o Paciente para o centro das decisões médicas.
Nas doenças RARAS, como as CDG, os pacientes e familiares são os verdadeiros especialistas, por isso é muito importante dar-lhes a Voz que merecem e necessitam.
Por um sistema de saúde mais justo, com mais qualidade, para TODOS e por TODOS. ASSINEM pela Nossa Saúde!#MaisParticipaçaoMelhorSaúde http://bit.ly/2etCPLv
The Rare Barometer initiative by EURORDIS has created a survey to assess the daily quality of life of people liviing with Rare Disease. It is a pionneer project with tremendous potencial and with great impact and importance.
But, for it to become even more relevant YOU need to participate! Your views are important and should be taken into account! YOU matter! YOU are RARE and an expert of the condition that affects you or your family member!
The survey is available in 23 languages.
Let your voice be heard at www.eurordis.org/voices
Share this message using #RareBarometer!
The Portuguese Association for CDG launches two pioneer projects focused on better understanding CDG symptoms experiences and their emotional impact
FOR IMMEDIATE PRESS RELEASE
The Portuguese Version is available HERE
Lisbon, 10th October 2016- Two research projects will document, for the first time, CDG symptoms and their emotional experiences among affected patients and families. These projects result from a fruitful collaboration between Pf Liz Forbat (Australia) and Pf Luísa Barros (Portugal), who embraced CDG as Working Groups Leaders at the CDG & Allies – Professionals and Patient Associations International Network (CDG & Allies PPAIN, more information HERE). Both works are an unique key contribution for CDG children’s and adults standards of care and the emerging evidence base
CDG are a rapidly expanding, serious and chronic rare metabolic disease for which there is no cure. The uncertainty, conflicting information, misdiagnosis, frequent trips to different doctors and specialists cause stress and anxiety among patients and their family members. “Both projects address a significant gap in knowledge related to the symptom profile of these serious rare diseases”, stated Vanessa Ferreira, PhD MBA (sister to a CDG adult patient, APCDG Founder and volunteer). “Clinicians do not know enough about the impact of living with these rare conditions. This work is an important step toward building a picture which will be helpful to families and clinicians world-wide”, added Pf Dr Liz Forbat (Professor of Palliative Care in Canberra, Australia). “When it comes to the direct experience of living with a rare disease, families are the experts. The insight provided by the description of their daily experience and the solutions they have been discovering to cope with the many challenges of living with CDG is a major contribution to all professionals and to other families that will face this diagnostic in the future!”, said Pf Dr Luisa Barros PhD (Professor at Faculdade de Psicologia, Universidade de Lisboa, Portugal).
In parallel to these projects, the campaign #CDGBelieve/#CDGAcredita will be launched. It aims at sharing inspirational quotes that may help families to overcome the feeling of isolation. Follow the campaign on Facebook (SindromeCDG page) and related social networks (@CDG_Portugal, LinkedIN). “Understanding the psychological impact of this condition among CDG families will help to identify the major key points in this area with the perspective of giving better support for CDG families”, stated Dorinda da Silva PhD (APCDG and CDG & Allies-PPAIN post-doc researcher). “We count with a wonderful international team. I truly believe these projects will bring very defined and important benefits to the CDG community”, said Rita Francisco, MSc Molecular Genetics (APCDG CDG & Allies-PPAIN researcher and social community manager).
Notes for editors: For more information about Pf Forbat and Pf Barros’ projects visit HERE and HERE.
About the Portuguese CDG and Other Metabolic Rare Disorders Association (APCDG):
Founded in 2010, APCDG (www.apcdg.com) is a patient led and centric non-profit association, whose particular goal is to stimulate new research lines that makes a difference in the lives of patients and families. APCDG initiatives are developed both nationally and internationally. APCDG is committed to finding a cure for Congenital Disorders of Glycosylation (CDG) and related disorders, improving the treatment options and giving information and support to people with CDG, through research, education, awareness programs and advocacy. APCDG top priority is to give a complete and holistic perspective of the patient as a person. Go to our website: www.apcdg.com
About CDG & Allies-PPAIN: With the help of a broad network of scientists, physicians, families and patient advocacy groups, we have established a patient-led national and internationally unrivaled infrastructure for research, awareness and education for CDG. The research on Glycosylation disorders is primarily dedicated to Congenital Disorders of Glycosylation (CDG). The advances and innovations achieved for CDG through CDG & Allies - PPAIN will impact on a large number of patients, namely, all human diseases characterized by abnormal protein glycosylation such as cancer, inflammation, Alzheimer's disease and diabetes.
Contact: Rita Francisco, MSc Molecular Genetics. Researcher at Working Group CDG & Heart. Learn more HERE. CDG community social manager. Email: firstname.lastname@example.org
EURORDIS has published a call for patient organisations to join the European Patient Advocacy Groups (ePAGs).
There is an ePAG for each ERN project proposal / thematic area of expertise. Patient representatives from any European Patient organisation (member or non member of EURORDIS) are called to join the ERN and fill in the EPAG Matchmaker tool here.
Join the ePAGs to connect with the ERN patient community.
EURORDIS Guide for Patient Advocates in ERNs
All information is available here
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