Boehringer Ingelheim receives prestigious Rare Disease Award

As a non-governmental patient-driven alliance of patient organisations, EURORDIS is the voice of 30 million people affected by rare diseases throughout Europe and represents 884 rare disease patient organisations in 72 countries.

“We are beyond proud of being awarded for our efforts by those who are affected by rare diseases or working in this area! “stated Carine Brouillon, Head of Therapeutic Areas. “Helping patients in their fight against life-threatening diseases is of paramount importance to us. Partnering with advocacy groups is extremely helpful to better understand patient needs in everything we do.”

All eyes on patients

Boehringer Ingelheim has been driving the research and development of therapies for rare diseases - including IPF, Scleroderma, Cystic Fibrosis, generalised pustular psoriasis (GPP) and palmoplantar pustulosis (PPP) – for years.

EURORDIS particularly appreciates Boehringer Ingelheim’s holistic approach to patient support that addresses patients’ medical needs as well as barriers to access, and the daily challenges of people living with a rare disease. An example of this approach is the ‘More Than Scleroderma’ initiative developed by Boehringer Ingelheim. Launched in 2017, the campaign and the accompanying website www.morethanscleroderma.com aims to provide people living with scleroderma, caregivers and healthcare professionals with a trustworthy, medically accurate information source on the condition. Scleroderma, also known as systemic sclerosis, is a rare disease characterised by thickening and scarring of connective tissue throughout the body.

Since 2004 Boehringer Ingelheim participated in open discussions with EURORDIS demonstrating an openness to exchange on critical issues impacting rare disease patients. In the area of cystic fibrosis Boehringer Ingelheim is collaborating with EURORDIS and the community to help structure early and meaningful patient input in clinical research. In 2018 and 2019 Boehringer Ingelheim has participated in a Cystic Fibrosis Community Advisory Board which serves as a platform for transparent and meaningful collaboration with the patient community to promote dialogue, exchange information and foster partnerships.

“Receiving this award is a major honor and helps to recognize colleagues from different functions at Boehringer Ingelheim who have been part of the collaboration with the rare disease patient community. It is also an obligation for us to further meet patient needs and expectations regarding medicines, clinical trials and services. For us none of this is possible without the collaboration with the patient community and the valuable insights and experiences the community can offer.” Henrik Finnern, Head of Global Patient Advocacy Relations

Rare Disease Day in February

The EURORDIS Black Pearl Awards Ceremony will take place in Brussels on 18 February 2020 to celebrate Rare Disease Day, the global awareness-raising campaign for rare diseases. During February, thousands of events take place in over 90 countries and regions, uniting millions of people living with a rare disease worldwide. Despite important advances, the rare disease community continues to face enormous challenges. The work and achievements of the awardees are of paramount importance to improving lives and finding cures for people living with a rare disease. www.rarediseaseday.org

About EURORDIS

EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 884 rare disease patient organisations in 72 countries (including China, Germany, Japan and the US). By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services. www.eurordis.org

About the Black Pearl Award

The EURORDIS Black Pearl Awards is an annual event held in Brussels to recognise the outstanding achievements and exceptional work of people making a difference for the rare disease community. The broader rare disease community, including EURORDIS patient organisation members, staff, volunteers and the general public submit nominations towards 12 award categories. The black pearl symbolizes these unique individuals, organisations and companies who demonstrate an incredible combination of hard work and dedication in their daily lives. www.Blackpearl.eurordis.org

Rare diseases

The European Union considers a disease as rare when it affects less than 1 in 2,000 citizens. Over 6,000 different rare diseases have been identified to date, affecting an estimated 30 million people in Europe and 300 million worldwide. Due to the low prevalence of each disease, medical expertise is rare, knowledge is scarce, care offering inadequate and research limited. Despite their great overall number, rare disease patients are the orphans of health systems, often denied diagnosis, treatment and the benefits of research.