"Solidarity" the 2012 theme focuses on the importance and the need for collaboration as well as mutual support in the field of rare diseases,

Let’s show them our Solidarity!

“It makes sense to act together because we face similar challenges”

We aim at extending this sense of solidarity to society at large: Get involved in Rare Disease Day 2012

People active in the field of rare diseases are not alone and need not act alone in order to meet their objectives. Although few and far between, collectively they are many and by acting together will be stronger.

United we are stronger

Since patients are rare, expertise is scarce and people living with rare diseases face similar challenges, so acting together makes sense.

Rare disease patients all over the world face the same types of challenges:

• Access to correct diagnosis
• Lack of information
• Overall lack of scientific knowledge
• Social consequences
• Lack of appropriate quality health-care
• High cost of the few existing drugs and care
• Inequities in availability of treatment and care
• Isolation

Together we can do more

“Rare diseases is an area where collaboration is essential”

The following are areas where it makes sense to join efforts:

• Access to correct diagnosis (Genetic testing, newborn screening)
• Increase availability of information (Coding and classification, telemedicine)
• Improve scientific knowledge (Registries and databases, international research platforms, multi-centred clinical research, development of drugs and diagnostic tests, training of professionals)
• Mitigate social consequences (Specialised social services that would improve the quality of life of people living with a rare disease and their families, such as Help Lines, Respite Care Services and Therapeutic Recreation Programmes)
• Increase provision of appropriate quality healthcare (International reference networks of centres of expertise, multidisciplinary care)
• Improve access to the few existing drugs and care (Pricing and reimbursement, healthcare reform)
• Eliminate isolation (Patients and families support and empowerment, networking and community building)

Building a better world for rare disease patients

Given the rarity of both patients and experts, most actions related to rare diseases have to be performed in cooperation between different countries, regions and levels. Progress for the benefit of rare diseases patients can only be achieved through close international cooperation.