Eurordis-Rare Diseases Europe

Eurordis-Rare Diseases Europe is an alliance of patient organizations which works to give rare patients a voice. It also strives to spread awareness of rare diseases to politicians and the public. There are currently over 800 organizations involved in the alliance. It is based in Paris.

Rare Barometer

The Rare Barometer Program was created three years ago by Eurordis-Rare Diseases Europe to help collect information from rare patients which could better inform the politicians creating policies surrounding rare diseases. This information is also valuable for researchers, patients, and caregivers alike.

This data is critical because it is inevitable that politicians will be ill-informed about many rare conditions. There are simply too many rare diseases (approximately 7,000) and too many other issues which require their focus and attention.

It is up to the rare disease community therefore, to guide politicians in deciding which policies should be adopted. We know better than they do and we need to share our knowledge.

The Rare Barometer Program surveys patients and their caregivers regarding their needs and desires and then shares this data with the politicians who are making decisions about their livelihood. The best part is that the organization knows that their surveys are being used by politicians because multiple individuals have actually quoted the surveys in their push for various policies.

Each year, 2-3 surveys are conducted. They are analyzed in simple terms and demonstrated by colorful charts and straightforward graphs. By making their reports so straightforward, the Rare Barometer Program ensures their information can be used by all.

Who is Included

There are 10,000 rare disease patients, caregivers, and family members represented in the program’s database. The vast majority of these individuals are from Europe however there are also participants from other countries as well. The countries with the highest number of participants are-

• France: 1,400 patients
• Germany: 1,000 patients
• United Kingdom: 800 patients
• Spain: 800 patients
• Italy: 800 patients

Of all of the 10,000 individuals in this database, approximately 3,000 participate in the surveys. 60% of these individuals are patients.

The Dissemination of the Surveys

It is important to note that all of the participant information collected by the surveys is kept confidential. This data can be invaluable. It creates a collective analysis which can provide critical information to researchers and politicians alike. The Rare Barometer staff works to create relationships with researchers conducting research that could be critical to the rare community.

They know however, that the dissemination of their data is essential to its positive influence on the rare disease population. To ensure this data is disseminated to the best of its ability, the reports are published in 23 different languages. The organization will also break down their reports by disease, participant age, country of origin, or any other factor if any of their member organizations requests a more specific analysis.

In addition to research, and awareness-building, the results from these surveys also help to build community within the rare disease population. The organization has heard patient anecdotes explaining that hearing the results from these surveys have helped them to feel less alone in their struggles. It helped them come to understand that there are other people in the world who understand what they’re going through.

Examples

1. Day-to-day Challenges: This 2017 survey examined the challenges that both patients and their caregivers face every day. Some of these included-
   1. Mental health
   2. Balance between family life and work life
   3. Numerous doctor visits in a short time period
2. Attitudes toward participating in research: This 2018 survey’s results included-
   1. 37% of patients had participated in some type of research
   2. Most view a lack of public funding as the biggest obstacle to research (as opposed to a lack of pharmaceutical industry funding)
   3. Rare patients want to help scientists in their search for novel treatments
   4. The primary reason for participation is the relationship patients build with the researchers conducting the study

Besides the clear benefits these reports provide politicians, they help to inform researchers on what type of studies are most important to patients/which types they would be willing to participate in. Additionally, the dissemination of the surveys helps to raise awareness about rare diseases to members of the public who might otherwise be completely unaware.

You can read more about these surveys and Rare Barometer’s impact here.