Advancing treatments for rare diseases Together



The EspeRare foundation today announced that Peter Potter-Lesage, former founding Chief Financial Officer of MMV -  Medicines for Malaria Venture, was appointed to the foundation board, increasing the board’s size to 7 members.

“Peter has a fantastic expertise in building financial models for NGOs in drug development, we are honored to be able to benefit from this experience in the neglected diseases space to support the EspeRare’s sustainability and impact in rare diseases” commented Caroline Kant, executive director.
Peter is a member of the Board of Trustees of the Malaria Consortium (UK) and Senior Advisor for fundraising, donor relations and strategy at Medicines for Malaria Venture (MMV) in Geneva, where he previously held the position of Chief Financial Officer for 12 years. As founding CFO, he planned and executed the creation of the finance, internal control and fundraising/donor relations functions and devised financial modeling, strategy, procedures, reporting systems & financial risk management. He managed the growth of the organization from $3M to $75M per annum and coordinated with the UK government and other agencies to promote innovative financing solutions for malaria. Prior to joining MMV, Peter was a Director at UBS Investment Bank as relationship manager for Geneva International Organizations and Associate Director at SBC Warburg specializing in treasury, foreign exchange and cash management. He is a UK/Swiss national, lives in Switzerland and speaks English, French and German.

As a board member and the Treasurer, Peter will provide his expertise in financial strategy, fundraising and business development as well as risk identification and management to support the grow of Esperare’s activities in rare diseases drug development, innovative marketing strategies and health management.


The Loterie Romande has awarded the foundation a grant to fund the development of its translational platform IT infrastructure.

This platform is currently under development and will facilitate:
- The systematic identification and evaluation of new therapeutic opportunities for rare diseases
- The standardized management of biomedical data generated during EspeRare’s development of new treatments
- Data sharing with external partners (patient groups, universities and pharmaceutical partners)

A first version of the translational platform will be launched by the end of the second quarter of 2014. Until December 2015, the performance of the platform will be optimized and other data sources such as libraries of pharmaceutical compounds from the NIH (National Institute of Health) will be integrated. This platform will promote the development of the EspeRare’s portfolio of projects in rare disease and will allow to manage data according to quality standards of the pharmaceutical industry and regulatory authorities.

Through its support, the Loterie Romande contributes to the development of the foundation’s activities, thus helping the foundation to expand its impact in addressing the healthcare burden of rare diseases.

About the Loterie Romande


EspeRare and University of Geneva have received a 235’000 CHF grant from the Swiss Commission for Technology and Innovation (CTI).

This contribution is supporting the development of Rimeporide, a drug that would have the potiential to treat Duchenne Muscular Dystorphy, a neuromuscular pediatric disease for which no cure exists. This grant from the the Swiss Commission for Technology and Innovation is financing EspeRare's preclinical investigation of Rimeporide in collaboration with the Geneva University School of Pharmacy. Within the University, the research on Rimeporide is conducted by Professor Leonardo Scapozza’s group under the supervision of Dr Olivier Dorchies, an international expert in Duchenne preclinical investigation.

About the CTI: As the Confederation's innovation promotion agency, the Swiss Commission for Technology and Innovation (CTI) lends support to R&D projects, to entrepreneurship as well as to the development of start-up companies in Switzerland. CTI helps to optimise knowledge and technology transfer through the use of national thematic networks.
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EspeRare is representing Switzerland within a European Cooperation in Science and Technology Action (COST) focused on Citizen’s Health 

Brussels, Wednesday 27th of November, as members of the management committee, Sharon Terry and Caroline Kant have kicked-off the IS1303 COST* Action called Citizen’s Health through public-private Initiative: Public health, Market and Ethical perspectives. Twenty-two countries are represented in this action that aims at developing legal and scientific guidelines in the area of Citizen Health, in particular genetic testing and screening, biobanking, health ethics and justice and public democratization of research.

*COST | Cooperation in Science and Technology is one of the longest-running European frameworks supporting cooperation among scientists and researchers across Europe


AFM's review committee has decided to finance the development of Rimeporide in Duchenne muscular dystrophy (DMD).

Paris the 17th of July 2012, the French patient organization, a pioneer in funding rare disease research, has provided a positive review of EspeRare’s plan to test the efficacy of Rimeporide, a NHE-1 inhibitor, in a DMD animal model. As a consequent, AFMTéléthon has confirmed its intent to co-finance the evaluation of the therapeutic potential of Rimeporide. The animal testing is been performed by Dr. Kanneboyina Nagaraju specialized in DMD at the Children’s research institute in Washington DC in Professor Eric Hoffman's research center for genetic medicine.



EspeRare starts two research collaborations to demonstrate preclinical efficacy of Rimeporide in Duchenne.

Geneva, Switzerland, August 19, 2013 - The foundation announces that it has started two collaborations with the University of Geneva (Switzerland) and the Children National Medical Center in Washington DC (USA) to develop Rimeporide, its lead programme in Duchenne Muscular Dystrophy (DMD). The objective of these collaborations is to assess the therapeutic utility of Rimeporide for Duchenne patients. Rimeporide is a safe and specific Na+/H+ exchanger type 1 (NHE 1) inhibitor previously developed by Merck Serono for cardiac failure.

Rimeporide preclinical efficacy will be tested in DMD mice models. The assessment will be conducted under the leadership of Dr. Kanneboyina Nagaraju specialized in DMD at Prof. Eric Hoffman's research center for genetic medicine, Children National Medical Center, Washington DC.
In parallel, Dr Olivier Dorchies, a recognised DMD preclinical expert at the Pharmaceutical biochemistry lab of Prof. Leonardo Scappozza, University of Geneva, will also investigate the dose / efficacy relationship of Rimeporide in a mice model  and evaluate the efficacy in various cell lines.

Preliminary data from both collaborations are expected by second quarter 2014.

This preclinical work together with the already available data will support further development of this compound in DMD patients. This program has ultimately the potential to address muscle degeneration and cardiomyopathy in a broad segment of DMD children.


GaugeRx, a new web-based assessment tool is in development to accelerate drug development for rare diseases.

WASHINGTON, DC – June 10, 2013 – The EspeRare Foundation of Geneva, Switzerland and Genetic Alliance of Washington, DC announced a collaboration to streamline the process of translating research into health outcomes by strengthening the decision-making for drug development. The collaboration will result in a dynamic, web-based analytics and assessment tool that integrates and translates vast amount of knowledge about human health and disease to support drug (re)positioning and development decision-making for a broad range of healthcare stakeholders, from pharmaceutical companies to advocacy groups.

Read the full press release here


The EspeRare foundation has been presented by Sharon Terry at the International Rare Diseases Research Consortium (IRDiRC) in Dublin, on April 16th.

About IRDiRC: The International Rare Diseases Research Consortium (IRDiRC) was initiated by the European Commission and the US National Institutes for Health Research and launched in April 2011 to foster international collaboration in the rare diseases field. IRDiRC will team up researchers and organizations investing in rare diseases research in order to achieve two main objectives, namely to deliver 200 new therapies for rare diseases and means to diagnose most rare diseases by the year 2020.

View the programme

 View conference report


Today we are proud to announce the launch of the EspeRare Foundation, a nonprofit organisation set up by three Merck Serono employees.

Geneva, Switzerland, April 15, 2013 – Merck Serono, a division of Merck, Darmstadt, Germany, today announced the launch of the EspeRare Foundation, a nonprofit organization set up by three Merck Serono employees, in the framework of the Merck Serono Entrepreneur Partnership Program (EPP). Merck Serono will donate an initial €2.8 million funding to the EspeRare Foundation. In addition, Merck Serono will transfer the rights of rimeporide, a compound previously developed for heart failure by Merck. The Foundation will investigate this compound in Duchenne Muscular Dystrophy (DMD), a lethal genetic rare disease affecting 1 in every 3 600 males.

Read the full press release here