Partners
Cooperating partners
95, Rare Alliance Greece
About: 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/
Hope for Rare Foundation
About: The Hope for Rare Foundation was founded in Hangzhou, China in 2022 by Mr. Rufang (Kevin) HUANG in partnership with 11 well-known scientists and entrepreneurs. It is the first non-profit foundation in China to focus on rare disease research and translational medicine. Our vision is to address the medical needs of patients with rare diseases through leveraging resources and guiding innovative technology to advance the development of both basic and translational clinical research.
The characters, "Rui Ou" are derived from the pronunciation of "Rare". It symbolizes the propitious and powerful spirit of the seagull, the emblem of the Foundation.
There are more than 7,000 rare diseases. Unfortunately, there are only 600 approved therapeutic medications available worldwide, which treat a mere 6% of rare disease. Almost none of those orphan drugs were independently discovered, developed, and approved by China. Patient groups and foundations drive one third of the early research into orphan drugs. As the first Chinese foundation dedicated to rare disease research and translational medicine, the Hope for Rare Disease Foundation with our partners aim to enhance investments in basic and translational clinical research to advance the care and cure for patients with rare diseases around the world.
The characters, "Rui Ou" are derived from the pronunciation of "Rare". It symbolizes the propitious and powerful spirit of the seagull, the emblem of the Foundation.
There are more than 7,000 rare diseases. Unfortunately, there are only 600 approved therapeutic medications available worldwide, which treat a mere 6% of rare disease. Almost none of those orphan drugs were independently discovered, developed, and approved by China. Patient groups and foundations drive one third of the early research into orphan drugs. As the first Chinese foundation dedicated to rare disease research and translational medicine, the Hope for Rare Disease Foundation with our partners aim to enhance investments in basic and translational clinical research to advance the care and cure for patients with rare diseases around the world.
Website: https://www.hope4rare.org.cn/
Beijing Illness Challenge Foundation
About: The Beijing Illness Challenge Foundation (ICF) is the very first public welfare foundation in Beijing focusing on the field of rare diseases. ICF is committed to support patient organizations that focus on medical treatment and rehabilitation as well as promoting policy and rights advocacy activities for rare diseases. It aims to establish platforms which involve participation from multiple actors and agencies, create signature projects that the public feel strong connections with, promote for a better social welfare coverage for rare diseases, solve urgent matters faced by the rare disease community, including medical treatment and rehabilitation, education, employment, and social inclusion. and eventually creat an equal and respectful environment for the community challenged by illness in the society. The Foundation is inspired by "the Ice Bucket Challenge" and founded on 29th February 2016, the International Rare Disease Day.
Website: https://www.chinaicf.org/
Chinese Organization for Rare Disorders
About: Chinese Organization for Rare Disorders (CORD), founded by Kevin HUANG in 2013, is a non-profit organization specializing in rare diseases. CORD works to promote exchange and cooperation among rare disease patients and organizations, medical specialists, pharmaceutical companies and governmental agencies. It is committed to enhancing public understanding of rare diseases, improving patients’ access to orphan drugs, fostering formulation of rare disease policies, and initiating international exchange and cooperation.
Website: http://www.cord.org.cn/#page1
Cooperating conferences
12th European Conference on Rare Diseases & Orphan Products
Time and Venue: May 15 – 16 2024 | online and Brussels
About:
The 12th European Conference on Rare Diseases & Orphan Products (ECRD) is recognised globally as the largest, patient-led, rare disease policy-shaping event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape goal-driven rare disease policies and allow for important and innovative discussions at national and international levels.
ECRD REGISTRATIONS https://www.rare-diseases.eu/register. Please feel free to use this active promo code ECRD24_MediaPx_OnL154 to provide 15% off on all registration categories for online attendance available.
Social Media List of EURORDIS’ sharable social media posts
Website: https://www.rare-diseases.eu/
Rare Disease Summit
Time and Venue: March 19-21, 2024 | Philadelphia, PA, USA
About: Unite with the rare disease community to create powerful partnerships, advance orphan therapeutics and deliver life-changing breakthroughs. Download the agenda, view speakers and register at www.informaconnect.com/rare. Save 10% using code 24RDODJ10.
Disease Modelling 2023
Time and Venue: May 03-04, 2023 | Virtual
About: Disease Modelling 2023! Meet the models: Understand disease progression & accelerate therapeutic development. Discover the application of Induced Pluripotent Stem Cells (iPSCs), Animal Models, and 3D Organoids in oncology & beyond. With insights from Talisman Therapeutics, Stanford University, the Karolinska Institute & many more. This event is free to attend for industry and academics, so register your interest now!
Indo US Bridging RARE Summit 2023
Time and Venue: Oct 29-30, 2023 | George Mason University, Arlington, VA, USA
About: In the 40 years since the Orphan Drug Act was legislated in the USA, there is a growing understanding of the importance of rare diseases that affect over 30 million Americans. While the situation in Europe is similar, no such awareness exists in many parts of the world, such as India, which is home to over a quarter of the world's population. It is time to change that for the 1.5 billion people in India and the 8 billion people worldwide.
The Bridging RARE Summit 2023 brings together key leaders representing all stakeholders of rare diseases from across the world with a specific focus on the USA and the Indian subcontinent.
The Bridging RARE Summit 2023 brings together key leaders representing all stakeholders of rare diseases from across the world with a specific focus on the USA and the Indian subcontinent.
Website: https://summit.indousrare.org/
Previous conferences
Rare Disease Innovations and Partnering Summit
Time and Venue: March 21-23, 2023 | Philadelphia, United States.
About: Rare Disease Innovations and Partnering Summit connect key stakeholders to drive therapeutic progress, propel commercial strategies and inspire impactful advocacy.
Generate solution-focused strategies surrounding patient access, reimbursement, commercialization, launch, partnering and more. Join experts from across the rare disease community to unite in areas of unmet medical need and create life-transforming therapies and breakthroughs.
Generate solution-focused strategies surrounding patient access, reimbursement, commercialization, launch, partnering and more. Join experts from across the rare disease community to unite in areas of unmet medical need and create life-transforming therapies and breakthroughs.
Clinical Trials in Rare Diseases Virtual Conference
Time and Venue: December 7, 2022 | Virtual
About: Arena International is delighted to announce the 3rd edition of Clinical Trials in Rare Diseases, brought to you online in the comfort of your own home.
With over 20 solution providers the virtual meeting will be a perfect platform to reconnect with current business partners, meet new vendors and discover which new technologies are being employed to improve your Rare Disease clinical trials. The virtual platform gives you the opportunity to hear and learn from others all around the world, with a truly global audience.
With over 20 solution providers the virtual meeting will be a perfect platform to reconnect with current business partners, meet new vendors and discover which new technologies are being employed to improve your Rare Disease clinical trials. The virtual platform gives you the opportunity to hear and learn from others all around the world, with a truly global audience.
The 4th International Conference on Rare Diseases
Time and Venue: December 7-8, 2022 | Vienna, Austria
About: RARE2022 will follow on from the success of its predecessors, continuing to address the challenges of Rare Diseases. The conference will expand on "generic topics", such as:
The program will also address new aspects of Rare Diseases including the challenges of rare variants of Rare Diseases, such as Type 3c Gaucher disease which may be an experiment of nature to vascular calcifications in old age, the growing challenges of genetic variants of uncertain significance (GVUS) and coping with Rare Diseases in different parts of the world, such as Georgia, Russia and India.
- The role of whole genome sequencing
- Screening strategies
- Monitoring and databases in rare diseases
- Innovative therapies
- Patient-centric medicine
- Current status of several specific diseases
The program will also address new aspects of Rare Diseases including the challenges of rare variants of Rare Diseases, such as Type 3c Gaucher disease which may be an experiment of nature to vascular calcifications in old age, the growing challenges of genetic variants of uncertain significance (GVUS) and coping with Rare Diseases in different parts of the world, such as Georgia, Russia and India.
Website: https://rare-2022.com/
2022 Rare Disease Symposium on Collaboration and Communication
Time and Venue: November 26-27, 2022 | Beijing,China
About: Every year, ICF hosts the Rare Disease Symposium on Collaboration and Communication in China. Under the guidance of the China Rare Disease Alliance, the symposium promotes the engagements between the patient organizations and other stakeholders, including doctors, hospitals, enterprises, governments, and the media. It also endeavors to find solutions for issues related to rare diseases, such as promoting public awareness and knowledge, improving the status of disease prevention and treatment, advancing research, and calling on raising the level of social security for people affected by rare diseases.
Website: http://rdforum.chinaicf.org/
2022 The first China Rare Disease Research and Translational Medicine Annual Conference
Time and Venue: November 11-12, 2022, Hangzhou, China.
About: 2022 The First China Rare Disease Research and Translational Medicine Annual Conference, organized by the Hope for Rare Foundation in 2022, aims to build a multi-disciplinary platform to facilitate communication and collabration among academia, industry, and business entities for rare disease research and translational medicine. The first conference will be held at Hangzhou Future Sci-Tech City from November 11th to 12th, 2022.
The conference emphasizes the strategy of scientific research first, makes "Scientific research will see the future" as the theme of the conference, focuses on scientific research and industrial policies, promotes the exchange of scientific research and translation at local and worldwide as well, and builds multi-party cooperation in Industry-University-Research to achieve in-depth dialogue between rare disease research/translational medicine and investment domain.
The conference emphasizes the strategy of scientific research first, makes "Scientific research will see the future" as the theme of the conference, focuses on scientific research and industrial policies, promotes the exchange of scientific research and translation at local and worldwide as well, and builds multi-party cooperation in Industry-University-Research to achieve in-depth dialogue between rare disease research/translational medicine and investment domain.
China Rare Disease Summit
Time and Venue: September 2-4, 2022 | Shanghai, China
About: China Rare Disease Summit Inaugurated in 2012, China Rare Disease Summit has become the largest and the most comprehensive rare disease conference in China. The annual summit promotes and facilitates open communications among multiple stakeholders, fosters collaboration, and makes significant contributions to policy advocacy in China.
- The largest, most comprehensive rare disease conference in China
- The most robust platform for interactive dialogues among different stakeholders in China
- A platform for showcasing the latest diagnostic and treatment products in China and abroad
- A discussion platform for the latest rare disease policies in China and abroad
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.
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
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.
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/
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
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.
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.
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
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
