COMPLETE: ERDERA survey

We kindly invite you to complete a short survey developed by ERDERA Work Package 25 – Task 4, which aims to gather insights into the current state of clinical research across the European Reference Networks (ERNs) and the involvement of ERN-affiliated Health Care Providers (HCPs) in the ERDERA project.

This survey supports the further development of the ERN Living Lab, an ERN research platform designed to foster cross-fertilization between researchers and clinical experts.

🔗 Survey link: https://forms.office.com/e/ZJYVAnA7mi

📄 Survey preview: You will find an example of the survey with all questions for [...]

Continue reading

This entry was posted in General.

ASK: Support from the CPMS Helpdesk

The CPMS Helpdesk is a resource to support all CPMS users with any technical issues that they have using the CPMS 2.0 system or app, ensuring clinicians are able to participate in virtual consultations. You can now even schedule a 1/1 session to receive personalized support.

Greta Ginski is the CPMS Helpdesk Manager and has been troubleshooting issues from Lubeck since June of 2024. She took the time to share her experiences and offer helpful tips for new CPMS users. She took the time to share her experiences and offer helpful tips for new CPMS users.

FAQ

The most [...]

Continue reading

This entry was posted in General.

APPLY: ERDERA Networking Support Scheme (NSS) funding call

The European Rare Diseases Research Alliance (ERDERA) has a call for the Networking Support Scheme (NSS). The deadline for this round of funding is open until early October. The aim of the NSS is to bring rare disease and the rare cancer community together across borders, disciplines and sectors.

This call will be open until April 2029 with applications being reviewed on a six-monthly basis.

To be eligible, applicants must plan a networking event with a clear rare disease or rare cancer research focus and address both aims of the call: promoting knowledge exchange and supporting greater inclusion of underrepresented [...]

Continue reading

This entry was posted in General.

NEW ePAG: Laura Maag from Surrénales

We are pleased to welcome Laura Maag as a new patient representative for the French association Surrénales. A dedicated member of the organization for over 16 years, Laura brings a wealth of experience and insight into adrenal conditions. She has actively contributed to key initiatives such as the European Emergency Card project and is deeply committed to advocating for patients’ needs. Her expertise and passion make her a valuable addition to the Endo-ERN community as we work together to improve quality of life for those living with rare endocrine conditions.

Welcome Laura!

Continue reading

This entry was posted in General.

COMPLETE: Short survey to assess treatment of (older) adults with XLH.

Cristina Eller-Vainicher and Giovanna Mantovani at member institution Fondazione Cà Granda IRCCS Ospedale Maggiore Policlinico, Milan, Italy are currently conducting an international survey to investigate current practices, access disparaties, and regulatory differences regarding Burosumab treatment in X-linked hypophosphatemia (XLH) with particular focus on:

Challenges in the transition phase from paediatric to adult care Access and treatment continuity for patients over the age of 65

This initiative is especially relevant as, in Italy, adult access to Burosumab is limited: after the age of 18, treatment is reimbursed in the presence of an active fracture or pseudofracture only, and, after the age [...]

Continue reading

This entry was posted in General.

NEW ePAG: ePAG Marc Büdenbender – Endo-ERN

We are pleased to welcome new ePAG Marc Büdenbender to Endo-ERN and MTG1.

Marc joined the board of Let’s Cure ACC after surviving stage IV adrenocortical carcinoma, driven by a strong desire to support others coping with this very rare and life-threatening disease. Becoming a member of the ePAG within Endo-ERN allows him to take that commitment to the next level — by working collaboratively with other patient representatives and medical experts in the field of rare adrenal disorders to improve patient care across Europe, equally and consistently, from diagnosis through [...]

Continue reading

This entry was posted in General.

COMPLETE: ERDERA ATMP Prioritisation Survey

European Rare Disease Research Alliance (ERDERA) invite you to share your expertise to help determine which factors matter most – from unmet medical needs to psychosocial impact and research readiness. Your input will ultimately directly influence future research finding and therapeutic innovation for are diseases. Developing Prioritising Cristeria for Advanced Therapies for Rare Diseases – Guiding ATMP Development Through Structured Criteria

You can find below:

survey link A short video and PPT explaining the project and the rare disease prioritisation framework The Detailed Framework

It will take [...]

Continue reading

This entry was posted in General.

DOWNLOAD NOW: CPMS 2.0 App now available in the Apple and Android stores

Another significant milestone in ERN history – CPMS 2.0 mobile app now available for download in the Android and Apple stores. This will increase the convenience of CPMS 2.0 use and the app is enhanced with several new features including:

advanced search audit logs enhanced meeting agendas improved user experience for assistants and admins.

If you are not yet using CPMS 2.0 for #virtual consultations now is the perfect moment to sign up and get started sharing or accessing expertise across the network.

Check out the available manuals and guides including a really [...]

Continue reading

This entry was posted in General.

APPLY: EuRREB Participating Centre Voucher

The European Registries for Rare Endocrine and Bone Conditions (EuRREB) has launched a new initiative: the EuRREB Participating Centre Voucher. This voucher will give financial support to either new, eligible centres to become an active center in the registries (Center Start-Up Voucher), or to already active centres to be able to contribute to one of the EuRREB studies (Advanced Centre Voucher).

Centre Start-Up Voucher

For new centres, who are not active in the Core Registry €500 per centre €250 after receiving ethics approval €250 after uploading 100 cases into the Core Registry Once a year, 6 centres (3 Endo-ERN members, [...]

Continue reading

This entry was posted in General.

NEW: EuRREB condition-specific modules

EuRREB

Our colleagues in the European Registries for Rare Endocrine and Bone Conditions (EuRREB) are excited to announce that the Langerhans Cell Histiocytosis (LCH) module is now live on the Core Registry platform.

This condition-specific module activates automatically once a patient with LCH is entered into the system- making data collection seamless and efficient.

What does the module include?

Clincial features (disease activity, biopsy results, genetic testing, organ improvement) Medical treatment (past and current) Malignancies & comorbidities Patient-reported outcomes via EQ-5D

The full data dictionary is available for download and more information [...]

Continue reading

This entry was posted in General.