UPCOMING EVENTS (25/03/2020)

Due to a situation of “force majeure” and international travel policies associated with COVID-19 outbreak several congressess and events have been postponed.

a. International course: Training on strategies to foster solutions of undiagnosed rare disease cases. Course ON-LINE.


27 – 29 April 2020. Istituto Superiore di Sanità, Rome, Italy.

Due to the force majeure situation, the international travel policies associated with COVID-19 and extraordinary measures to limit the spread of the virus, the Italian health authorities (including the Istituto Superiore di Sanità, ISS), recommend adopting a precaution approach and cancel the planned trips and events. In order to ensure the correct progress of the planned tasks of EJP RD, ISS ensures that the international course “Training on strategies to foster solutions of undiagnosed rare disease cases”, 27-29 April 2020, ISS, Rome will be held ONLINE.

b. The European Conference on Rare Diseases & Orphan Products (ECRD). https://www.rare-diseases.eu/programme/ 

ECRD will take place ONLINE on 14-16 May

The 10th European Conference on Rare Diseases & Orphan Products (ECRD 2020) will be held at the Stockholmsmässan Congress Center in Stockholm, Sweden on 15th to 16th May 2020.

ECRD is a biennial event that has allowed the rare disease community to gather since 2001 to monitor and benchmark relevant initiatives, drive the policy framework around rare disease diagnosis, treatment and care and empower the rare disease community to drive change where it is needed most. For more information follow the link www.rare-diseases.eu

c. Living Rare, Living Stronger 2020. https://rarediseases.org/living-rare-forum/ 

NORD is headed to Cleveland, Ohio for the 2020 Living Rare, Living Stronger Patient and Family Forum. What’s even more exciting–the Rare Impact Awards, included in this event, will be hosted at the iconic Rock & Roll Hall of Fame!

Living Rare, Living Stronger is an annual patient-focused conference held in a different location each year. Its agenda provides patients and families with practical tools for living their best lives with rare diseases and physicians and medical students with insights to take back to their practices and studies. For more information plese visit the event website. 

d. 24th Human Genome Meeting HGM 2020. http://hugo-hgm2020.org/

The Human Genome Meeting will be held in Perth, Australia on 5 to 8 April 2020. Human Genome Meeting (HGM) is a series of annual conferences organized by the Human Genome Organisation (HUGO). HGM centers on a stimulating and interesting program of plenary lectures, symposia, workshops, poster presentations, public lectures, satellite meetings and social events (gala dinner, visits and laboratory tours). For more information plese visit the event website.

e. 9th Global Patients’ Congress. www.globalpatientscongress2020.org.uk/home

The 9th Global Patients’ Congress will be held in Edinburgh, Scotland on 16-18 April 2020. The Congress is IAPO’s flagship event where we bring together our global membership with a variety of high-level health care stakeholders to discuss important issues for patients worldwide.

Bringing together around 250 patient advocates from across the world, It's an experience that celebrates patient advocacy and patient-centred healthcare. The Global Patients Congress is where healthcare stakeholders from all over the world gather to share their stories, their successes, and learn from each other. For more information plese visit the event website.. 

f. RE(ACT) Congress and IRDiRC Conference. https://www.react-congress.org/

International Congress Of Research On Rare And Orphan Diseases 

Postponed to the first months in 2021.

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