Event starts in
Date
4th - 6th May 2021Time
2:00PM Onwards (IST)About People to People Health Foundation
Our Mission
It is to transform lives for improved health and wellbeing through locally-driven solutions.
Our Expertise
People to People Health Foundation (PPHF) works closely with communities and key actors on sustainable solutions for public health challenges. Our area of expertise include:
- Non-Communicable Diseases
- Women, Adolescent and Child health
- Nutrition
- Infectious diseases
- Environmental Health
Our Values
- Stewardship to fulfill our commitment to make positive impact
- Accountability for our work and results
- We do more because we collaborate
- We strive constantly to innovate
Global Rare Disease Conference
Blueprint for rare diseases
Date
28 Feb 2021
Time
5:45PM - 9:30PM IST
About the Event
Together for Rare: Blueprint for Rare Diseases in India
Why GLOBAL RARE DISEASE Conference?
Rare diseases pose unique challenges to society and healthcare systems. Globally, some 7,000 rare diseases have been identified. Positively, several significant events in the global policy agenda have helped to give more momentum to rare diseases, such as the UN 2030 Agenda and Sustainable Development Goals (SDGs) and the drive towards universal health coverage, which are centered around leaving no-one behind, as well as the recent establishment of the NGO Committee for Rare Diseases. Despite such advancements, many countries including India do not have tailored policy frameworks today and there still is a large unmet medical need for Rare diseases. However, at the same time we have some best practices from countries like France, Germany etc.
A shift in mindset is required whereby rare diseases are not considered in isolation but rather regarded as a significant component within health policy frameworks. Considerable barriers exist in terms of awareness, prevention, access to appropriate care, delayed diagnosis and limited or non-existing treatment options. To add on to the listed burdens, we have COVID19 pandemic which has given shivers to the global health system altogether. The rare disease patient community has played a critical role, elevating the patient voice and mobilizing legislation to support the development of programs that address the needs of patients with rare diseases. If we apply the international estimation of 6% to 8% of population being affected by rare diseases, to India, we have between 72 to 96 million people affected by rare diseases in the country. Over 80% of rare diseases are genetic in origin and hence disproportionately impact children. Almost 50% of new cases are in children and are responsible for 35% of deaths before the age of 1 year, 10% between the ages of 1 and 5 years and 12% between 5 and 15 years. The impact on families is often catastrophic in terms of emotional as well as financial burden, as the cost of treatment is prohibitively high. A supportive policy environment is therefore necessary to foster care and management and empower patients and their communities in India. India has a draft Rare Disease Policy waiting for release but due to the pandemic situation, all the planning has gone for a toss. MoHFW is working reviewing, collating, and updating the recommendations received post draft policy was released in the public domain for review.
GLOBAL RARE DISEASE Conference- Together for Rare: A Blueprint for Rare Diseases in India
It is a pioneering initiative designed as multi-stakeholder initiative and collaboration focused on rare diseases in India. The initiative is foresighted and seeks to prioritize the needs of people suffering with Rare Disease by bringing together diverse partners, discussing challenges, innovation and strengthening the nation’s commitment towards delivery of greater impetus and better outcomes for all. It is expected to generate dialogues, build synergies, and bring forward a concrete and actionable comprehensive charter as an outcome and reinforce commitment on it for the cause.
Journey so far
Considering the importance of Rare Diseases for achieving health goal of India, PPHF facilitated a review process to understand the policy and program from leaders in the central and state government, experts, and industry along with review of secondary and published information. The purpose of the review was:
To analyze the available evidence and develop some priority action agenda for Rare Diseases in India. The key features of the process included:
- Identification of key stakeholders to understand their prospective on this topic and
- Literature Review- Review of accessible publications, journals, reports etc. on public domain
- Identification of key evidence gaps, where additional knowledge needs to be generated
- Preparation of a summary report and action agenda
Creating a supportive policy environment was one of the critical solutions that came up from the review process. Since then, PPHF has been actively working with its partners including international, national, and State players for organizing Regional and Global consultations to better understand critical drivers, strategies and solutions for Rare Diseases. To view the complete review document, please visit the resource section.
Both PPHF and FICCI collaboratively facilitated a review meeting for structured discussions around the draft rare disease policy released by the Government in the public domain for inputs. Over 40 diverse stakeholders, representing government, non-governmental organizations, civil society, corporate leaders, industry networks, bilateral development agencies, patient organizations, medical institutions, academia, researchers, clinicians and Rare Diseases experts, met for the Roundtable Discussion on “Draft National Policy for Rare Diseases” on February 7, 2020 using a structured participatory meeting methodology called Open Space Technology. The outcome of this discussion was a consensus document reflecting key recommendations to strengthen the Draft National Policy for Rare Diseases prepared from detailed deliberations by a diverse group of respected experts and stakeholders in Rare Diseases. The recommendations were submitted to the MoHFW, PMO and Finance Minister for further action. For detailed document, please visit the resource section.
PPHF and GRID Council, with support from Takeda Pharmaceuticals convened an international webinar on “Resilience approach towards rare disease policy in India” on 4th August 2020. The agenda for webinar was Resilience Approach Towards Rare Disease Policy in India highlighting the need to resurface and prioritize Rare Diseases as health priority in the COVID era. The webinar represented a combination of very high-level speakers from USA and India from sectors like Academia, industry, ministry, public health organizations, and patient advocates to help us better understand the opportunities and challenges for prioritization and management of Rare Diseases. For detailed report, please visit the resource section.
PPHF, jointly with the State Government of West Bengal, co-powered by Takeda Pharmaceutical, organized the virtual consultation on rare diseases for eastern states of India on 12th December 2020. The consultation was the first in the series - "The Blueprint for Rare Disease in India initiative", an attempt to enhance policy commitment to prioritize access, investment, and partnerships on rare diseases in India. Initiatives associate partners included ORDI, LSDSS, Cure SMA Foundation of India (Strategic partners), GRID council (Research partner) and Institute of Child Health, Kolkata (Knowledge partner). For the recommendations that came out from the event, please visit the resource section. And to view the event recording, click here. .
The second edition of the virtual conference, under the initiative “Blueprint of Rare Diseases in India” was held in collaboration with Government of Chandigarh and Punjab, for northern India on 22nd January 2021. The initiative is co-powered by Takeda Pharmaceutical and supported by Japan Embassy, Institute of Child Health, Kolkata, GRID Council, LSDSS, ORDI, RDIF, and Cure SMA Foundation of India. The recommendations from the consultation are to be released soon. To watch the event recording, click here.
The last regional event is scheduled for 16th February 2021 with the Government of Karnataka. The initiative is co-powered by Takeda Pharmaceutical and supported by Japan Embassy, Institute of Child Health, Kolkata, GRID Council, LSDSS, ORDI, RDIF, and Cure SMA Foundation of India. Click here to Register.
Recognizing the complexity of the issues around Rare Disease, we will bring a wide range of experts, champions, and leaders together from disciplines such as public health, industry body, NGOs, PAGs, IT, Media, COE, MOH&FW, Women and child development, Tribal Affairs, Ministry of State etc, NGOs and UN, bi-lateral and unilateral agencies, and others. The platform will highlight best practices across India and globally, learn from cross-country experience, and create sensitize stakeholders on prioritizing rare diseases. Following the conference, PPHF along with its partners will work towards compiling and submitting policy and programmatic concrete actions to the Government as part of supportive plan.