Government urged to approve life-changing drugs to treat rare diseases

Pixabay Hermann Traub

"By releasing the film publicly, we hope to not only continue to empower and unify people living with rare diseases, but to also educate the public about this common struggle faced by millions of Americans".

There are 70 million rare disease patients in India and 350 million rare disease patients worldwide.

Meanwhile, in one of his statements reported by EIN News Desk, Daniel A.de Boer, Chief Executive Officer of ProQR has claimed that it is the company's mission to make a meaningful impact on the lives of patients that suffer from severe genetic rare diseases.

With most rare diseases having no cure or even effective treatment available, living with or having someone who has a rare disease can be extremely traumatic both physically and mentally.




"With a great majority of rare diseases touching children", Kaucic said, "we believe our approach will enable us to be a more connected and active partner".

Cambridge BioMarketing, the world's leading rare disease and specialty communications agency, today announced the public availability of Rare in Common, a film project honoring people living with the challenges of a rare disease. Thus, it is believed that educating the patient and physicians at medical congresses is an important outreach to the rare disease community to facilitate proper and prompt diagnoses. "We need to create more awareness about rare diseases and impress upon the government the need to focus on an Orphan Drug Policy for rare diseases", Prasanna Shirol, co-founder of Organisation for Rare Diseases India (ORDI), told PTI. Rare diseases and disorders are less likely to receive the funding and awareness required to accelerate research.

Rare Disease Day takes place on the last day of February each year. "World Rare Disease Day raises awareness and solidarity, and our company is thrilled to be a year-round stakeholder by defining new rare diseases, improving diagnostics, generating new biological knowledge and inspiring novel targeted drug strategies".

The Indian Society for Clinical Research (ISCR) is an association of clinical research professionals that aims to build awareness of clinical research as a specialty in India and to facilitate its growth in the country while helping to evolve the highest standards of quality and ethics.

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