In November 2021, Takeda Pharmaceutical and UNGCNI launched a national initiative to improve early access to treatment for patients with rare diseases in India. The Joint Rare Diseases Initiative has taken on the challenges of ensuring access to treatment for rare disease patients waiting on the crowdfunding portal in an integrated manner. Through the initiative, more than 300 UAPs and business leaders have been reached, helping to generate a set of insights and recommendations that will help shape the future of access to treatment for rare diseases in the country.
The six-month intensive initiative has been able to bring together groups of stakeholders (private sector, UAP, corporate giants, etc.) who can support the mobilization and operationalization of financing for the rare disease within the framework CSR grants and donations to strengthen the existing crowdfunding mechanism and channels. defined in India’s policy on rare diseases.
In addition, he created the roadmap to meet the funding needs of rare diseases in line with government policies and guidelines from the Ministry of Corporate Affairs, Department of Public Enterprises and Ministry of Health and Family Welfare of the Government Indian.
Eminent experts from public and private sector organizations participated in the initiatives, including MoH&FW, AIIMS (New Delhi), Kerala State Legal Services Authority (KELSA), CoEs (SGPGI, Lucknow, KEM, Mumbai, SSKM, Kolkata), and 24 PSUs and CEOs (e.g. BHEL, Bharat Petroleum, ONGC, etc.).