patients – EJP RD – European Joint Programme on Rare Diseases

Solve-RD Public Symposium: The Impact of Solve-RD on Research & Care of Rare Disease Patients

Onakoy Tanguy — Wed, 22 Mar 2023 14:32:27 +0000

Solve-RD, a research project funded by the European Commission for five years (2018-2022), having the ambitious goals set out by the International Rare Diseases Research Consortium (IRDiRC) to deliver diagnostic tests for most rare diseases by 2020, invites all its partners to attend the Solve-RD Final Meeting 2023 in Prague (Czech Republic) or online. The meeting will take place on 24-26 April 2023 and the registration deadline for on-site participation is 27 March 2023 and for online participation 23 April 2023.

Registration: here in order to attend the Solve-RD Final Meeting either online or on-site.

More information here

General Assembly of TEDDY Network

Ngangta Mbaidoum — Wed, 06 Jul 2022 08:40:09 +0000

The General Assembly of TEDDY Network will be held online, within a hearing at the Council of Europe this July 7th from 9.30 to 14.00 CEST. TEDDY Network will present some activities (part of which were developed within EJPRD) to be considered as good practices promoting the empowerment of children and facilitating their participation in decision making process in healthcare and research (including child-friendly materials, policies, activities).

Please see the announcement here. Registration is compulsory. The link to connect is included in the agenda.

Training for patient representatives and advocates on leadership and communication skills

Ngangta Mbaidoum — Thu, 03 Mar 2022 16:05:33 +0000

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 organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP-RD task partners, open to patient representatives involved in the 24 European Reference Networks (ERNs), including members of the European Patients Advisory Groups (ePAGS), and other RD patient advocates.

The in-person training will take place from November 10th – 11th at ISS in Rome, Italy.

The training course may be adapted to an online format in case of uncertainty due to the evolution of the Covid-19 pandemic, or of other adverse conditions that might occur. In case of face-to-face delivery, the organisers have foreseen

hotel accommodation for all selected participants
4 travel and accommodation fellowships for participants living and working in an EU-13 Country or in Turkey.

Registration is currently open but will close on April 13th. The training is limited to 30 attendees, those chosen to participate from among the applicants will be informed by May 3rd, with a reserve list open until May 20th (if the training is delivered face-to-face) or September 9th (in case of online delivery).

More information and registration here: https://www.ejprarediseases.org/event/training-for-patient-representatives-and-advocates-on-leadership-and-communication-skills/

UN General Assembly formally adopts Resolution on Persons Living with a Rare Disease and their Families

Ngangta Mbaidoum — Fri, 17 Dec 2021 11:40:58 +0000

Following a sustained campaign by rare disease patient advocacy organisations such as Rare Diseases International and with the support of several Member States, the United Nations (UN) General Assembly has formally adopted on December 16th 2021 with the consensus of all 193 UN Member States the UN Resolution on Addressing the Challenges of Persons Living with a Rare Disease and their Families.

This is the first ever UN text to give full visibility to the over 300 million persons living with a rare disease worldwide and calls for action to address the specific challenges faced by these individuals and their families.

The document focuses on the importance of non-discrimination and the key pillars of the UN Sustainable Development Goals, including health, access to education and decent work, reducing poverty, tackling gender inequality, and supporting participation in society.

This is a major shift in international policy which places the needs of persons living with rare diseases firmly on the agenda of the UN and its agencies (UNICEF, UN WOMEN, UNDP).

For more information: https://www.rarediseasesinternational.org/un-resolution/

EURORDIS Photo Award 2022

Onakoy Tanguy — Fri, 19 Nov 2021 08:30:27 +0000

The EURORDIS Photo Award is an opportunity to visually express what it means to live with a rare disease and to share your story with the rare disease community and beyond.

The contest is open to all nationalities, ages, and diseases. Every year, hundreds of people from all around the world submit their photos, each reflecting the drive of people living with a rare disease.

Submissions for the 2022 Photo Award will be open until 16 January 2022.

More information and submit your photo here.