VASCERN will hold a webinar on Tuesday November 23rd, 2021 from 5pm to 6pm (CET) entitled: Diagnostic and Management Pathway for Severe and/or Rare Infantile Hemangiomas with Dr. Andrea DIOCIAIUTI, VASCA WG member and dermatologist from Bambino Gesù Children’s Hospital, I.R.C.C.S, in Rome, Italy. This will be the the first of a series of four webinars exploring the Patient (Diagnostic and…
DEADLINE EXTENDED: 23 NOVEMBER 2021 Are you an adolescent aged from 12 to 18 interested in the themes of health, biomedical research, healthcare, and children rights?Are you a patient with a chronic rare disease interested in getting the skills to contribute in developing and shaping research making it more suitable for children?If yes, this paediatric…
On October 6th, 2021, the European Commission (EC) opened a new funding call titled “Tackling diseases (Two Stage – 2022) (HORIZON-HLTH-2022-DISEASE-06-two-stage)” in the context of the Horizon Europe Framework Programme on the development of new effective therapies for rare diseases. Since the EC recommends that proposals try and take stock of the FAIR guidance and other models…
Yesterday marked the official launch of Screen4Care which is a new EU Research Project focussed on accelerating diagnosis for Rare Disease patients through genetic newborn screening and advanced analysis methods such as machine learning and Artificial Intelligence. The project will run for a period of five years with a total budget of EUR 25 million provided by the Innovative Medicines Initiative (IMI 2 JU), a joint undertaking…
The Duchenne Data Foundation, in collaboration with the World Duchenne Organization, is launching the 2021 edition of the Duchenne Patient Academy (DPA). In this intensive training session, patient advocates receive training and updates to build a strong base for current and future global advocacy. Applications are now open here. Duchenne Patient Academy works in partnership…
The deadline for the EJP RD ERN Research Training Workshops funding opportunity has been extended to October 22nd. The goal of the workshops is to train researchers and clinicians affiliated to ERN- Full Members or – Affiliated Partners in relevant topics on research in rare diseases. Training themes may include innovative research methodologies, diagnostic research methodologies, interdisciplinary treatment approaches, such as gene therapy and transplantation, etc. Moreover,…
The Food and Drug Administration’s (FDA) Office of Orphan Products Development (OOPD) is pleased to announce availability of funds for fiscal years (FY) 2021 – FY 2022 to support innovative and efficient clinical trials for rare diseases and conditions. These studies are intended to provide acceptable data to the FDA that will substantially contribute to…
Primary Care Task Force on « Identifying Key Challenges and Opportunities to Advance IRDiRC Goals with Focus on Primary Care » The IRDiRC Diagnostics Scientific Committee (DSC), Interdisciplinary Scientific Committee (ISC), and Funders Constituent Committee (FCC) have set up a joint Task Force to identify challenges and opportunities in rare diseases research focusing on primary care. This may include diagnosis,…
The Innovative Medicines Initiative (IMI) is organising a series of online live sessions on IMI’s Impact, where key actors will explore the challenges and demonstrate how IMI contributed. The next session will be focused on patient involvement on the 7 October at 14:00-15:30 (CET/Brussels Time). Registration is open here. They will analyse the challenges and…
The European Forum for Good Clinical Practice and the Drug Information Association are organising The Paediatric “Better Medicines for Children” Conference, an annual flagship event providing a unique opportunity to share best practice updates and a truly global outreach. The event will take place on 18-19 October 2021. Registration is open here. This year the…