UDNI's working groups

Wilhelm Foundation is one of the co-founders of UDNI (Undiagnosed Diseases Network International). We participate in some of the UDNI's working groups:

Program Commitee Group

In brief: The UDNI Program Committee consists of 7 members, i.e., representatives of the 4 membership categories, the host institution, the funder (currently the Common Fund), and the Wilhelm Foundation. Linking the Program to a scientific meeting is considered beneficial, in particular to justify participant travel. The UDNI has no objections to industry participation in its general meetings.

UDNI Program Commitee Group: Ratna Puri (India), William Gahl (USA), Helene and Mikk Cederroth Wilhelm Foundation (Sweden),  Bela Melegh (Hungary), Paul Lasko (Canada), Domenica Taruscio (Italy)

Communication Group 

In brief: The Communications Committee is responsible for coordinating UDNI information transfer.

Domenica Taruscio (Chair, Italy), Rumen Stefanov (Bulgaria), Stephen Groft (USA), Helene and Mikk Cederroth (Sweden), William Clyde Partin (Atlanta, GA). Vincenzo Nigro (Italy), Bela Melegh (Hungary), Paul Melmeyer (USA), Ugur Ozbek (Turkey), Shinya Yamamoto (USA), Vanessa Boulanger (USA), Manuel Posada (Spain), Marco Salvatore (Italy)

UDNI ISS Comunication Group Team: Marco Salvatore, Tiziana Grassi, Agata Polizzi, Gianluca Ferrari.

Membership Committee

In brief: The UDNI Membership Committee reviewes all applications for membership and accept new members on a rolling basis.

Eric Klee (Chair, Mayo Clinic USA), William Gahl (USA), Helene Cederroth (Sweden), Domenica Taruscio (Italy), , Paul Lasko (Canada), Bela Melegh (Hungary),  Marco Salvatore (Italy).

Patient Engagement Group

The Patient Empowerment Group (PEG) aims to empower People Living With an Undiagnosed Disease (PLWUD) by providing support, resources, and advocacy. PEG focuses on improving their access to information, ensuring their voices are heard in medical research, and facilitating connections between them, healthcare providers, and researchers. By fostering a collaborative environment, PEG helps to advance the understanding and treatment of rare and undiagnosed conditions.

Helene Cederroth (Wilhelm Foundation), Gulcin Gumus (EURORDIS) and a representant from NORD.

Genetic Counseling Group

The purpose of the Genetic Counseling working group is to address the genetic counseling needs of People Living With an Undiagnosed Disease (PLWUD) and their families who participate in an Undiagnosed Diseases Program. Through engagement with these individuals, their families, and various stakeholders, the group considers their information, psychosocial, resource, planning, research participation, and networking needs during and after their participation in a UDP, and works towards developing solutions to meet those needs.

Stephanie Broley (Australia), Janine Lewis (USA), Helene Cederroth (Wilhelm Foundation), Lorenzo Botto (USA)

Low- and Middle-Income Countries 

Domenica Taruscio (Chair, Italy), Manuel Posada (Spain), Samuel Wiafe (Ghana), Gareth Baynam (Australia), Helene Cederroth (Sweden), Bela Melegh (Hungary), Yasemin Alanay (Turkey), Maria Cutiongco-de la Paz (Philippines), Vajira Dissanayake (Sri Lanka), Dineshani Hettiarachchi (Sri Lanka), Roberto Giugliani (Brazil), Saumya Shekhar Jamuar (Singapore), Claudia Gonzaga-Jauregui (Mexico), Oleg Kvlividze (Georgia), Guida Landoure (Mali), Ugur Ozbek (Turkey), Ratna Puri (India), Vinod Scaria (India), Vorasuk Shotelersuk (Thailand) and Steve Groft (USA).