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Partners

Cooperating partners

95, Rare Alliance Greece

95, Rare Alliance Greece is a Greek non-profit Patient Organization advocating for all who live with a rare and an undiagnosed rare disease. The Organization's main objective is to address everyday problems faced by patients with rare and undiagnosed rare conditions in Greece, but also to build a future for our national rare disease community. Therefore, not only it supports policy making, capacity building, education, and patient advocacy, but also promotes research in the field of rare disorders and ensures the transfer of knowledge, innovation and learning from abroad.

Website: https://rarealliance.gr/

Cooperating conferences

2nd International Conference on Rare Diseases: Greek Chapter

Time and Venue: March 1-2, 2022 | Greece

About: The 2nd International Conference on Rare Diseases will be live on your screen on Tuesday 1st and Wednesday 2nd of March 2022. Based on the special theme The Balancing Act between Equity and Sustainability” this year’s conference recognizes the need to promote and protect the human rights of all persons, including the estimated 300 million persons living with a rare disease worldwide, many of whom are children, by ensuring equal opportunities to achieve their optimal potential development and to participate in society fully, equally, and meaningfully. 
The Conference is organized by Health Daily and BOUSSIAS in cooperation with '95 Rare Alliance Greece' under the patronage of Rare Diseases Europe (EURORDIS), and with the support of the European Federation Pharmaceutical Industries and Associations (EFPIA), the European Health Forum Gastein (EHFG), the European Patients Forum (EPF), the European Confederation of Pharmaceutical Entrepreneurs (EUCOPE), the Greek Patients’ Association, the Institute of Pharmaceutical Research & Technology (IFET)  and the Hellenic Association of Pharmaceutical Companies (SFEE).
Main Streams will focus on:  
1 | Building a Sustainable Healthcare System based on equity, equality and patient rights 
2 | European vs National RD Action Plans
3 | Advancing Policy Discussion on Prevention and Newborn Screening as Pillars of Public Health 
4 | Data Wealth in Rare Diseases
5 | Thinking out of the box: Alternative Access and Funding Models for Rare Diseases

  • A. Transforming Access Models for RDs
  • B. New Access Models for RD Medicines
  • C. New Funding Models for Access
  • D. New Funding Models for RD Drug Development 
6 | Rare Disease as a National Priority in Greece

Website: https://www.rarediseases-conference.com/

Rare Diseases Foundation Annual Scientific Conference: COLLOQUE SCIENTIFIQUE ANNUEL 2022

Time and Venue: May 31, 2022 | Paris, France

About: The Foundation For Rare Diseases organizes a scientific symposium at the Collège de France in Paris each year during springtime. Through this event, It offer a day of exchange, debate and meetings to all those involved in rare diseases and to encourage the emergence of new research projects. The program is built around presentations of the Foundation's award-winning projects and the sharing of experiences. The presentations in the plenary room are broadcast live on YouTube and will be accessible later on YouTube channel. Learn more at YouTube, Twitter and LinkedIn.

Website: https://evenements-fondation-maladiesrares.org/event/colloque-scientifique-national-2022/

6th European Aniridia Conference

Time and Venue: June 3-5, 2022 | Alicante, Spain

About: Aniridia Europe, the scientific organizing committee, and the Spanish Aniridia Association are pleased to announce the upcoming VI European Aniridia Conference that will take place between Friday the 3rd and Saturday the 5th of June 2022, in Alicante, Spain.
This time the Spanish Aniridia Association, the first Aniridia association to be founded, back in 1996, in collaboration with Aniridia Europe, will bring together social and healthcare professionals from all over the world, experts on basic and clinical research on Aniridia and WAGR spectrum.
During the conference, experts will discuss the newest Aniridia therapies, best treatments, ongoing cutting-edge research papers where specific clinical cases are presented, epidemiological reports, social improvements proposals, etc. This information will paint a picture of the current state of people living with Aniridia and WAGR spectrum in Europe.
People living with Aniridia and WAGR spectrum and their families will share the physical space of the event: through allotted times and through spokespeople, they will receive information about the most important and interesting information discussed by the invited professionals.
Registration is now available and Call for Abstracts is open. You can find all the information in the link below:
Registration page

For further questions, please, send an e-mail to conference2022@aniridia.es or visit the official website.

Website: https://aniridiaconference.org/eac2022/

European Conference on Rare Diseases and Orphan Products (ECRD) 2022

Time and Venue: June 27-July1, 2022 | Virtual

About: Designated as an official event of the 2022 French Presidency of the Council of the European Union, the 2022 European Conference on Rare Diseases and Orphan Products (ECRD) provides the opportunity for cutting-edge thinking and innovative discussions between European and international stakeholders within the field of rare diseases. Inspired by the Rare 2030 project, the online conference will discuss the implementation of a new policy framework based on our three visionary goals, which envisages a better future for people living with rare diseases in Europe and around the world. 
Registrations to attend the European Conference on Rare Diseases are now open! Register now: http://rare-diseases.eu/register

Website: https://www.rare-diseases.eu/

Previous conferences

54th Annual European Human Genetics Conference

Time and Venue: August 28-31, 2021(Virtual)

About: The ESHG Conference has two main scopes: to provide a platform for the dissemination of the most exciting advancements in the field of human genetics and to foster the education of the upcoming generation of human geneticists. Plenary, concurrent and educational sessions, concurrent symposia, workshops and poster viewing fill in an exciting program. The Scientific Program Committee (SPC) defines the topics, with the goal to update the audience on emerging concepts, mechanisms, and technologies in human genetics, providing at the same time a broad view on the progress made in the different areas of our discipline. Invited talks are given by world class speakers and best abstracts, many of which submitted by young doctors and scientists, are selected by the SPC for oral presentations. The meeting will also allow to make direct contacts between scientists and exhibitors, who will present their new product portfolio, with practical demonstrations, to help you in your clinical or experimental work.

Website: https://2021.eshg.org/

1st International Conference on Rare Diseases and Paediatric Research

Time and Venue: November 18-19, 2021(on virtual)

About: The Conference is organized by "95" Rare Alliance Greece together with Consorzio per Valutazioni Biologiche e Farmacologiche (CVBF) and Athena Research and Innovation Center in Information Communication & Knowledge Technologies. It is scheduled to take place virtually on November 18th-19th, 2021. More information on the organizers can be found here, the Scientific Program can be accessed by clicking here.

Website: https://www.pedrare2021.eu/welcome/

Annual Meeting of the AGD 2021

Time and Venue: December 09-10, 2021(Bonn and Virtual)

About: AGD (Arbeitsgemeinschaft für Gen-Diagnostik e.V.) is a non-profit organization that aims to communicate scientific findings of genome research in particular through the exchange of ideas and technology, and to promote young scientists. Two instruments of the AGD are of particular importance in this regards, the annual conference and the GestaltMatcher project. GestaltMatcher is an artificial intelligence that can assist in differential diagnosis by analyzing clinical text and image data, such as portrait photographs.

Website: http://agdev.de/tagung2021.html

Rare Diseases Foundation Annual Scientific Conference: Issues and Challenges of Research in Rare Diseases

Time and Venue: May 17, 2021(virtual)

About: The French Foundation for rare diseases (Fondation maladies rares) is a unique cooperative framework dedicated to rare diseases research. Co-founded by French University Hospitals, Universities, Research organisations and Patients’ organizations, it acts as a strategic hub to coordinate, federate and fund rare diseases research, essentially at the French national level. Its support spans from basic, translational and clinical sciences to social and human research towards effective health care for patients affected by rare diseases. In accordance with current health rules, we have chosen to maintain our annual scientific conference initially planned at the Collège de France in the form of a virtual conference, with an adapted program.

Website: https://evenements-fondation-maladiesrares.org/event/colloquescientifique2021/

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