Rare Disease Day 2016: The Patient Voice

International Rare Disease Day is celebrated on the last day of February to raise awareness of rare diseases amongst the general public, researchers, healthcare professionals and policymakers. Now in its ninth year Rare Disease Day is celebrated in over 80 different countries with events in hundreds of cities. The theme for Rare Disease Day 2016 is the Patient Voice with a campaign inviting a wider audience to join us in making the voice of rare diseases heard.

Increasing awareness of rare diseases in the public and political domains ensures they remain an international health priority, helping patients access high quality care. Patients and their advocacy groups have crucial roles in raising awareness and can help others understand patient needs. In addition they can help instigate changes in policy and healthcare that can improve the lives of patients, family members and carers.

Patients and family members are often experts in their own disease and care, which can be very important when there is a lack of general medical knowledge. Patients can offer their personal experiences and identify their most pressing needs to help researchers and industry develop effective treatments and care strategies. Additionally expert patient involvement in regulatory reviews can help ensure patients can access the most critical treatments and interventions earlier.

Several training opportunities are provided by major rare disease organisations to support patients and advocacy groups that want to be representatives at a national and international level. In the UK, Findacure supports both established and developing patient advocacy groups, running regular training workshops and providing online guides. Similar patient advocacy support is available in other countries from organisations including NORD in the USA and CORD in Canada. Patient advocates interested in training related to clinical research and regulatory affairs can also attend the EURORDIS ExPRESS summer school.

The BHD Foundation provides support to BHD patients and researchers from around the world, and represents the BHD community at numerous international conferences helping to raise awareness. As well as promoting research, we encourage patients to share their stories and expertise through the website and forums including a patient-run Facebook group. Being able to seek advice and reassurance from others in a similar situation can help rare disease patients feel less isolated and more confident to discuss their condition. The organisations above can offer assistance for those wishing to create new support groups but communities can also be create on global platforms like RareConnect.

It is estimated that 1 in 17 people will be affected by a rare disease in their lifetime, meaning that cumulatively rare diseases are not actually uncommon. Rare disease day is a chance to further raise awareness of the impact of rare diseases and the need for representation in research and healthcare. Find out how you can help spread awareness by visiting the Rare Disease Day website, joining the Thunderclap campaign on social media and sharing your own story. You can also find events near you and share the details of your own events online.

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