Rare Disease Day 2022: How some patient groups have come together to raise awareness and create real change
In this series we continue to spotlight examples of how health campaigners across the world work together to provide exceptional support to patients and their loved ones.
As we approach Rare Disease Day 2022 it is worth remembering the significant work that rare disease patient advocacy groups do to improve life for those affected by rare diseases and the impact that they have had.
A disease is rare when it affects fewer than 1 in 2,000 people, and today there are over 6,000 identified rare diseases. Rare Disease Day aims to raises awareness for the 300 million people living with rare disease around the world, plus their families and carers. (Rare Disease Day, 2022)
Rare diseases can have relatively common symptoms, often leading to misdiagnosis and the subsequent delaying of treatment. The patient’s quality of life is then impacted by the chronic, progressive, degenerative and frequently life-threatening aspects of the disease. For these reasons, patient advocacy is a key tool in raising awareness and achieving equitable access to diagnosis, treatment, health and social opportunity for people affected by a rare disease.
We’re taking a look at a handful of examples where patient groups have achieved real progress for those they advocate for.
A global grassroots campaign from patient groups for UN support and recognition
On 16th December 2021 the United Nations Resolution on ‘Addressing the Challenges of Persons Living with a Rare Disease and their Families’ was adopted.
This was a significant victory because the UN resolution provides visibility for the rare disease community on the global policy landscape and will protect and promote their human rights on a global level. Along with this, there is also the assurance that rare diseases will be among the UN priorities in its 2030 agenda.
This resolution was possible because of a three-year global and grassroots campaign led by the NGO Committee for Rare Diseases, Rare Diseases International and EURORDIS-Rare Diseases Europe and national rare disease groups from over 100 countries. Their tireless advocacy included a Rare Disease Day 2019 Policy Event at the United Nations in New York to launch the call for the resolution, creating a toolkit, Resolution4Rare, to ensure a co-ordinated approach to raising awareness and organising 54 country co-sponsors for the resolution. (Rare Disease Day, 2021)
‘Rare Barometer Voices’, an initiative from the patient group alliance EURORDIS, produced research considered in EU cooperation on rare diseases
The ‘Rare Barometer Voices’ is a survey tool for people living with a rare disease to provide their input and share their experiences of access to health care, medical and social research. The barometer is a research initiative from EURORDIS, the European Organisation for Rare Diseases. EURORDIS is a patient-driven alliance of patient organisations and represents the voice of an estimated 30 million people living with a rare disease.
With such small populations of patients across many rare diseases, national and global data sharing is key to gathering evidence and insights to improve life and treatments for patients. A lack of data is a key challenge for those working in and living with rare diseases. EURORDIS has managed to collect broad research from the Rare Barometer Voices survey and direct this toward EU plans for increased EU cooperation to tackle rare diseases. (EURORDIS, 2021)
Last year, 4,000 patients across 70 countries responded to the ‘Rare Barometer Voices’ survey which provided valuable insight into the future of rare diseases and has helped to shape the EU’s Rare 2030 recommendations. In turn, these recommendations include advice on tackling rare diseases at an EU level, including a call for better cross-border data sharing to underpin the development of treatments and health services. The recommendations are timely, as the European Commission prepare to create a plan for rare diseases that would set out objectives and policy recommendations for member states. (Rare2030, 2022)
Raising awareness on a local level for rare diseases in India
Each year in February, the Organisation for Rare Diseases India (ORDI), a national umbrella organisation of 25 non-profits, supports ‘Race For 7’, an event to raise awareness for the rare disease community in India. Although India has a National Rare Disease Policy, there are still issues with access to treatment and funding. (ORDI, 2022)
Race for 7 represents the 70 million rare disease patients in India and the average 7 years it takes to diagnose such diseases. Participants are invited to run, walk or cycle for 7km to support the cause and raise awareness and advocacy across India for rare diseases.
These milestones and victories demonstrate the power of coming together as a community of people living with a rare disease, their families, friends and carers. The 2020 Rare Disease Day message still stands true two years later, that ‘rare is many, rare is strong, rare is proud’.