These tools will no longer be maintained as of December 31, 2024. Archived website can be found here. PubMed4Hh GitHub repository can be found here. Contact NLM Customer Service if you have questions.
2. [Healthcare networks for people with rare diseases: integrating data and expertise]. Graessner H; Storf H; Schaefer F Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz; 2022 Nov; 65(11):1164-1169. PubMed ID: 36167994 [TBL] [Abstract][Full Text] [Related]
3. European Reference networks for rare diseases: what is the conceptual framework? Héon-Klin V Orphanet J Rare Dis; 2017 Aug; 12(1):137. PubMed ID: 28784158 [TBL] [Abstract][Full Text] [Related]
4. Centres of Expertise and European Reference Networks: key issues in the field of rare diseases. The EUCERD Recommendations. Taruscio D; Gentile AE; Evangelista T; Frazzica RG; Bushby K; Montserrat AM Blood Transfus; 2014 Apr; 12 Suppl 3(Suppl 3):s621-5. PubMed ID: 24922304 [TBL] [Abstract][Full Text] [Related]
5. European Reference Networks and Guideline Development and Use: Challenges and Opportunities. Morciano C; Laricchiuta P; Taruscio D; Schünemann H Public Health Genomics; 2015; 18(5):318-20. PubMed ID: 26227062 [TBL] [Abstract][Full Text] [Related]
6. Epidermolysis bullosa House Austria and Epidermolysis bullosa clinical network : Example of a centre of expertise implemented in a European reference network to face the burden of a rare disease. Laimer M; Pohla-Gubo G; Diem A; Prodinger C; Bauer JW; Hintner H Wien Klin Wochenschr; 2017 Jan; 129(1-2):1-7. PubMed ID: 27909793 [TBL] [Abstract][Full Text] [Related]
7. [European Reference Networks for rare diseases]. Vos JR; van Zelst-Stams WAG; Hoogerbrugge N Ned Tijdschr Geneeskd; 2018; 162():D2376. PubMed ID: 29676715 [TBL] [Abstract][Full Text] [Related]
8. [Measures to improve the health situation of patients with rare diseases in Germany. A comparison with the National Action Plan]. Frank M; Eidt-Koch D; Aumann I; Reimann A; Wagner TO; Graf von der Schulenburg JM Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz; 2014 Oct; 57(10):1216-23. PubMed ID: 25209683 [TBL] [Abstract][Full Text] [Related]
9. Position statement on the role of healthcare professionals, patient organizations and industry in European Reference Networks. Hollak CE; Biegstraaten M; Baumgartner MR; Belmatoug N; Bembi B; Bosch A; Brouwers M; Dekker H; Dobbelaere D; Engelen M; Groenendijk MC; Lachmann R; Langendonk JG; Langeveld M; Linthorst G; Morava E; Poll-The BT; Rahman S; Rubio-Gozalbo ME; Spiekerkoetter U; Treacy E; Wanders R; Zschocke J; Hagendijk R Orphanet J Rare Dis; 2016 Jan; 11():7. PubMed ID: 26809514 [TBL] [Abstract][Full Text] [Related]
10. Telemedicine strategy of the European Reference Network ITHACA for the diagnosis and management of patients with rare developmental disorders. Smith M; Alexander E; Marcinkute R; Dan D; Rawson M; Banka S; Gavin J; Mina H; Hennessy C; Riccardi F; Radio FC; Havlovicova M; Cassina M; Emandi AC; Fradin M; Gompertz L; Nordgren A; Traberg R; Rossi M; Trimouille A; Sowmyalakshmi R; Dallapiccola B; Renieri A; Faivre L; Kerr B; Verloes A; Clayton-Smith J; Douzgou S; Orphanet J Rare Dis; 2020 Apr; 15(1):103. PubMed ID: 32334637 [TBL] [Abstract][Full Text] [Related]
11. [European Reference Network for Rare Hepatological Diseases (ERN RARE-LIVER)]. Schulz L; Sebode M; Schramm C; Lohse AW Internist (Berl); 2021 Apr; 62(4):441-448. PubMed ID: 33687527 [TBL] [Abstract][Full Text] [Related]
12. The European Union Policy in the Field of Rare Diseases. Moliner AM; Waligora J Adv Exp Med Biol; 2017; 1031():561-587. PubMed ID: 29214592 [TBL] [Abstract][Full Text] [Related]
13. ERN BOND: The key European network leveraging diagnosis, research, and treatment for rare bone conditions. Casareto L; Appelman-Dijkstra NM; Brandi ML; Chapurlat R; Cormier-Daire V; Hamdy NAT; Heath KE; Horn J; Mantovani G; Mohnike K; Sousa SB; Travessa A; Wekre LL; Zillikens MC; Sangiorgi L; Eur J Med Genet; 2024 Apr; 68():104916. PubMed ID: 38296035 [TBL] [Abstract][Full Text] [Related]
14. The pooling of manpower and resources through the establishment of European reference networks and rare disease patient registries is a necessary area of collaboration for rare renal disorders. Parker S Nephrol Dial Transplant; 2014 Sep; 29 Suppl 4():iv9-14. PubMed ID: 25165190 [TBL] [Abstract][Full Text] [Related]
15. [Seven years of the National Action League for People with Rare Diseases : NAMSE - a success story?!]. Halbach A; Schnieders B; Knufmann-Happe K Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz; 2017 May; 60(5):479-486. PubMed ID: 28337510 [TBL] [Abstract][Full Text] [Related]
16. Interoperability Architecture for a Paediatric Oncology European Reference Network. Nitzlnader M; Canete Nieto A; Ribelles AJ; Brunmair B; Ladenstein R; Schreier G Stud Health Technol Inform; 2016; 223():39-45. PubMed ID: 27139383 [TBL] [Abstract][Full Text] [Related]
17. Evidence-based data and rare cancers: The need for a new methodological approach in research and investigation. Mathoulin-Pélissier S; Pritchard-Jones K Eur J Surg Oncol; 2019 Jan; 45(1):22-30. PubMed ID: 29526369 [TBL] [Abstract][Full Text] [Related]
18. [Does the healthcare for rare diseases benefit from the legislative reforms?]. Heyder R Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz; 2017 May; 60(5):487-493. PubMed ID: 28289779 [TBL] [Abstract][Full Text] [Related]
19. [Healthcare services for people in Lower Saxony (Germany) suffering from a rare disease: Findings from a survey among medical professionals]. Pauer F; Pflaum U; Lührs V; Frank M; Graf von der Schulenburg JM Z Evid Fortbild Qual Gesundhwes; 2016; 113():36-44. PubMed ID: 27480187 [TBL] [Abstract][Full Text] [Related]
20. Wide disparity of clinical genetics services and EU rare disease research funding across Europe. Lynch SA; Borg I J Community Genet; 2016 Apr; 7(2):119-26. PubMed ID: 26536881 [TBL] [Abstract][Full Text] [Related] [Next] [New Search]