ejp rd – EJP RD – European Joint Programme on Rare Diseases https://www.ejprarediseases.org Wed, 22 Mar 2023 14:57:51 +0000 en-GB hourly 1 https://wordpress.org/?v=5.9.9 https://www.ejprarediseases.org/wp-content/uploads/2020/11/cropped-index-32x32.png ejp rd – EJP RD – European Joint Programme on Rare Diseases https://www.ejprarediseases.org 32 32 Training for patient representatives and advocates on leadership and communication skills https://www.ejprarediseases.org/15279-2/?utm_source=rss&utm_medium=rss&utm_campaign=15279-2 Fri, 17 Mar 2023 15:03:23 +0000 https://www.ejprarediseases.org/?p=15279 As part of the training activities proposed by EJP RD, an international course entitled “Training for patient representatives and advocates on leadership and communication skills” is a 2-day training programme that will take place from October 26th – 27th at MUG in Gdańsk, Poland.

Registration is currently open but will close on April 26th.

More information and registration here.

]]> DEADLINE EXTENDED: EJP RD – ERN Workshop: Psychological, molecular and administrative aspects of Hereditary breast and ovarian cancer genetic population screening (HBOC GPS) https://www.ejprarediseases.org/deadline-extended-ejp-rd-ern-workshop-psychological-molecular-and-administrative-aspects-of-hereditary-breast-and-ovarian-cancer-genetic-population-screening-hboc-gps/?utm_source=rss&utm_medium=rss&utm_campaign=deadline-extended-ejp-rd-ern-workshop-psychological-molecular-and-administrative-aspects-of-hereditary-breast-and-ovarian-cancer-genetic-population-screening-hboc-gps Thu, 16 Mar 2023 15:31:19 +0000 https://www.ejprarediseases.org/?p=15277 The deadline for the “Psychological, molecular and administrative aspects of Hereditary breast and ovarian cancer genetic population screening (HBOC GPS)” EJP RD- ERN Workshop has been extended until March 24th. Registration is open here.

The in-person event, which aims to educate researchers and clinicians on psychological, molecular and administration aspects of HBOC GPS, will take place on 27-28 April 2023 in Riga, Latvia.

This workshop is addressed to clinical geneticists, laboratory geneticists, breast surgeons, gynecologists, oncopsychologists, public health specialists, medical oncologists, radiologists, radiotherapists, pathologists – employees or affiliated to an ERN-Full Member or affiliated Partner institution.

More information here

]]> EJP RD Training: Biobanking in rare diseases: the Poland experience https://www.ejprarediseases.org/ejp-rd-training-biobanking-in-rare-diseases-the-poland-experience/?utm_source=rss&utm_medium=rss&utm_campaign=ejp-rd-training-biobanking-in-rare-diseases-the-poland-experience Fri, 21 Oct 2022 08:27:22 +0000 https://www.ejprarediseases.org/?p=13958 The upcoming EJP RD training entitled Biobanking in rare diseases: the Poland experience is now open for registration.
The 2-day training will be held on November 28-29th online. The training is dedicated to scientists of biomedical sector who want to learn about biobanking standards in rare disease research.
Registration is open until November 10th.
Register and get more information here.

]]> Registration open for the Third International Summit on Human Genome Editing https://www.ejprarediseases.org/registration-open-for-the-third-international-summit-on-human-genome-editing/?utm_source=rss&utm_medium=rss&utm_campaign=registration-open-for-the-third-international-summit-on-human-genome-editing Wed, 05 Oct 2022 08:13:06 +0000 https://www.ejprarediseases.org/?p=13840 The registration for the Third International Summit on Human Genome Editing is now open. The event will take place on 6-8 March 2023 at the Francis Crick Institute, London UK.

Register for free here

The Third International Summit on Human Genome Editing will take place on 6-8 March 2023 at the Francis Crick Institute, London UK. Building on previous events held in Washington, DC (2015) and Hong Kong (2018), this Summit will continue the important dialogue around human genome editing. It will facilitate a global discussion on somatic and germline genome editing, including developments in clinical trials and genome editing tools such as CRISPR/Cas9. Earlier this year a three-part series of online events Looking Ahead to the Third Human Genome Editing Summit discussed some of the key topics of the meeting.

Related news: Dr. Daria Julkowska, Coordinator of the EJP RD, is a member of the planning committee. More information here

]]> Rare Conversations – Rare Disease Policies: Pioneering the way towards a resilient ecosystem https://www.ejprarediseases.org/rare-conversations-rare-disease-policies-pioneering-the-way-towards-a-resilient-ecosystem/?utm_source=rss&utm_medium=rss&utm_campaign=rare-conversations-rare-disease-policies-pioneering-the-way-towards-a-resilient-ecosystem Wed, 05 Oct 2022 07:23:12 +0000 https://www.ejprarediseases.org/?p=13831 EJP RD is glad to partner with Alexion’s annual Rare Conversations conference, “Rare Disease Policies: Pioneering the way towards a resilient ecosystem”, that we will partner.

The event will reflect on several aspects that may be included in the new legislative framework, trying to answer the question: How to create a resilient rare disease ecosystem for the next decade?

During the opening session, the European Expert Group on Orphan Drug Incentives will present its work and proposals on how to build a sustainable rare disease ecosystem, in connection to the revision of the OMP Regulation. Then, the panels will focus on specific aspects to analyse, by listening to the voices of experts in the field. A breakout session will be dedicated to partnerships for the future, and how a partnership approach can address key outstanding challenges. The conference will conclude with a discussion on the possible policies to adopt to favour innovation and set access, with a particular attention to the regulatory approach to reach these goals. 

Block your calendar on 13 October, from h14.00 to h18.00 CET, and join also the following networking reception.

Registration, programme, and more information here.

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