Fighting for our federation Federg f2f Members meeting September 14 Martorell
The members of FEDERG, the Federation of Groups of patients affected by a genetic and rare kidney disease, met to celebrate 10 years of fighting for rare and genetic kidney diseases and to propose new ways to be a European force in the inclusion policies of these pathologies.
After the unfortunate death of its honorable president Tess Harris, from PKD Charity Uk, who passed away on March 1st, Susana Carvajal Arjona, representative of patients with Familial Hypomagnesemia and Gitelman Syndrome, Hipofam in Spain, also Coordinator for 4 years of the European Group of Patient Representatives of the European Kidney Reference Network (ERKNet), took over as president of FEDERG.
13 representatives of European patients from Italy, the Netherlands, Germany, Spain, Ireland and England, from different pathologies and communities of genetic and rare renal patients such as Alport Syndrome, Polycystic Disease, Cystinosis, Atypical Hemolytic Uremic Syndrome, Hereditary Hypomagnesemias, Gitelman Syndrome and national federations such as ALCER and AIRG met in Martorell, in a face-to-face meeting and other members connected telematically to discuss among themselves and plan activities for 2025.
The FEDERG members have been accompanied by 2 expert pharmacists from the Vall d’Hebron Institute team, Carla Soto and José Ramón Jarrín Luengo and by a pharmaceutical company ENYO Pharma interested in briefly presenting a project, Alpestria 1, a medicine for patients with Alport syndrome.
Likewise, the representative of Hemolytic Uremic Syndrome, Francisco Montfort has presented as a Spanish study model a tool, Evalshua project that seeks to reflect the quality of patients with SHUA with a view to developing a similar study model for patients with SHUA on a European scale and gave us an update on medications for Shua patients.
For his part, the representative and member of the EKPF European Kidney Patients Federation, also a member of the FEDERG Board of Directors, Juan Carlos Julián presented this other successful federation as a model to encourage its members to follow in its footsteps.
The objective of this meeting was to plan new practical actions that help improve and promote knowledge of these pathologies, promote research, and be an active part in the political decision-making process for the inclusion of our pathologies.
A place to reflect on: What future activities could add value to FEDERG members in their role as representatives of rare kidney diseases? How can we get more attention paid to rare kidney diseases? How can we pressure governments and pharmaceutical companies to invest in rare kidney diseases, even in the smallest disease groups? What can we work on together to better defend rare kidney diseases?
Susana explained that if the world understands rare kidney diseases better, research and treatments will come more easily, since together we are stronger and that is the value of FEDERG.
