Advancing treatments for rare diseases together

Rare diseases

14Feb

EspeRare involved in the RDI-Lancet Commission on Rare Diseases

Esperare, RDI-Lancet, Rare diseases

Sharon Terry, EspeRare’s President & CEO of Genetic Alliance, has been named a Commissioner of the newly launched Rare Diseases International (RDI)-Lancet Commission on Rare Diseases (RDI-LCRD). This prestigious initiative brings together experts from across six continents to advance evidence-informed policy recommendations aimed at improving the lives of Persons Living with a Rare Disease (PLWRD) worldwide.
Chaired by Dr. Roberto Giugliani (Brazil) and Dr. Kym Boycott (Canada), the RDI-LCRD will play a crucial role in shaping the future of rare disease policies globally. The launch of this Commission comes at a pivotal moment, coinciding with the World Health Organization (WHO) Executive Board meeting, where the upcoming World Health Assembly (WHA) Resolution on Rare Diseases will be discussed. This resolution, currently co-sponsored by 21 Member States, is expected to call on the WHO to develop a 10-year Global Action Plan on Rare Diseases, representing a significant step toward making rare diseases a global health priority.
EspeRare strongly supports this international momentum and recognizes the vital role of multi-stakeholder collaborations in addressing the unmet needs of the rare disease community. Sharon Terry’s leadership and deep commitment to patient advocacy will undoubtedly contribute to the Commission’s success in shaping policies that drive meaningful change for individuals and families affected by rare conditions.

For more details on the RDI-Lancet Commission, visit: Rare Diseases International-Lancet Commission website.

19Mar

EspeRare becomes a member of EURORDIS

EURORDIS, patients associations, Rare diseases

EspeRare is now a member of EURORDIS, a federation of patient organisations and people active in rare diseases, which works to improve the quality of life of rare disease patients.

EURORDIS brings together over 700 patient organisations from over 60 countries representing 30 million patients with 4000 distinct rare diseases.

By becoming a member of EURORDIS, EspeRare reaffirms its commitment to placing rare disease patients at the centre of its efforts: we aim to provide patients with the best possible therapies and treatment conditions, hand in hand with our partners and with public stakeholders.

10Jun

EspeRare and Genetic Alliance to develop GaugeRx

GaugeRx, knowledge management, Rare diseases, translational research, Genetic Alliance

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

15Apr

Launch of the EspeRare Foundation

Foundation, Esperare, Rare diseases

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