The EJP RD Rare Disease Day Video is online!

Happy Rare Disease Day! Watch EJP RD contributors answer the web’s most search questions about rare diseases in a new video that you can find HERE (subtitles available).  Like every year, EJP RD is proud to contribute to spreading awareness on Rare Disease Day.   Don’t forget to share the video and subscribe to our Youtube channel and to our Twitter to be kept updated on our funding opportunities, Read more about The EJP RD Rare Disease Day Video is online![…]

IRDiRC: Two New Task Forces

The International Rare Diseases Research Consortium (IRDiRC) is glad to announce the opening of two new Task Forces: “Shared Molecular Etiologies Underlying Multiple Rare Diseases” aiming to address and document the existing challenges in adapting the basket trial approach used in molecularly targeted oncology clinical trials to drugs targeting shared molecular etiologies underlying multiple rare Read more about IRDiRC: Two New Task Forces[…]

Biogen’s virtual event: virtual event: “Unlocking innovation and access for rare disease patients in Europe”

On the occasion of Rare Disease Day 2021, Biogen is pleased to invite you to the virtual event: “Unlocking innovation and access for rare disease patients in Europe” taking place on Monday, 22 February from 14:00 to 15:45 CET. Biogen’s event, done in collaboration with Reuters and EU40, will highlight the need for continued political Read more about Biogen’s virtual event: virtual event: “Unlocking innovation and access for rare disease patients in Europe”[…]

EMA’s draft toolbox guidance on scientific elements and regulatory tools

The European Medicines Agency (EMA) has published for public consultation a draft toolbox guidance on scientific elements and regulatory tools to support quality data packages for PRIME marketing authorisation applications. The EMA launched the PRIME scheme to enhance support for the development of medicines that target an unmet medical need. This voluntary scheme is based Read more about EMA’s draft toolbox guidance on scientific elements and regulatory tools[…]

FDA Rare Disease Day Virtual Public Meeting

The Food and Drug Administration will be holding a virtual public meeting on Friday, March 5, 2021, from 9:00 a.m. to 4:00 p.m. EST to highlight strategies to support rare disease product development. Please visit the public meeting page to register for the event. To learn more about other activities relevant to rare diseases and Read more about FDA Rare Disease Day Virtual Public Meeting[…]

Council of Europe initiative on children rights participation in biomedical field

If you are interested in participating in an initiative in order to contribute to the implementation of the children rights in research and medical field, the Council of Europe launched an initiative on children rights participation in decision making in the biomedical field. The UN Convention on the Rights of the Child and other Human Read more about Council of Europe initiative on children rights participation in biomedical field[…]

A EURORDIS position paper: Key Principles for Newborn Screening

For the first time, EURORDIS, alongside its Council of National Alliances, Council of European Federations and its members, have set out 11 Key Principles to support a harmonised European approach to Newborn Screening. The vast inequalities across Europe, coupled with technological and scientific advances highlight the urgent need to move forward from the status quo. The principles Read more about A EURORDIS position paper: Key Principles for Newborn Screening[…]

Register to the Information Webinar for the JTC2021

The EJP RD is glad to invite you to the information webinar organised for potential applicants to the Joint Transnational Call 2021 on “Social Sciences and Humanities Research to Improve Health Care Implementation and Everyday Life of People Living with a Rare Disease”.  The webinar will take place online on February 2nd, 2021 3:00pm – 4:30pm CET.  REGISTER HERE All interested Read more about Register to the Information Webinar for the JTC2021[…]

EURORDIS Photo Award 2021

You don’t have any plans for this weekend? Take a camera with you and send us a picture that captures how is daily life when you live with a rare disease! #EURORDISAwards2021   Send your picture here: https://blackpearl.eurordis.org/photo-award/