On behalf of the Malaysian Rare Disorders Society (MRDS), I wish to convey our gratitude to the Rare Disease Foundation of Iran for inviting me to say a few words since I am unable to be with you this Sunday 26th February to participate in the 8th Congress for Commemorating Rare Disease Day 2017 which bears the motto “Rare Disease Patients Without Borders”. Likewise, the Malaysian Rare Disease Society is also holding our Rare Disease Day on the same day.
Rare diseases are a global health challenge and we are grateful that since EURORDIS initiated the inception of Rare Disease Day in 2008, widespread recognition and international advocacy have brought hope to the rare disease community across the globe.
Nevertheless, we still have to overcome the never ending new challenges. The burden of rare disease is unacceptably heavy for patients, families, the community and the health system. We face inequitable access to early diagnosis, fair and coordinated treatment and services, and coordinated research.
We hope much of these challenges will be overcome by the NGO Committee for Rare Diseases that was recently set up in November 2016 under an international umbrella grouping called the Conference of NGOS in Consultative Relationship with the United Nations (CoNGO). This NGO Committee for Rare Disease will works towards the recognition and integration of rare disease in future Sustainable Development Goals (SDGs) global policies of the United Nations.
We must now work together to support CoNGO to ensure the burden of rare diseases will be minimal and bring meaningful changes to the lives of all persons with rare disease and their families.