Joint Declaration by member organisations

[IAPG]

RARE DISEASES: A NATIONAL PUBLIC HEALTH PRIORITY 

The patient movement in India for Rare Diseases is gathering momentum and the time has come to be seen as a unified voice working for common interests. Let us pledge to work together supporting and helping each other with our strengths, geographical presence and resources

We therefore jointly adopt the following 10 principles to be addressed at national level as a matter of priority: 

Visibility of Rare Diseases 

1. Enhance visibility of rare diseases at a national level in terms of public awareness and within the healthcare system as a human rights issue and a public health priority.

2. Better classification and codification of rare diseases to support the process towards better recognition of rare diseases in India. 

Patient Empowerment 

3. Support and empower patients and families to play an active role in shaping national health care provision that is appropriate to their needs. 

4. Develop, gather, share and disseminate information on rare diseases in linguistically and culturally appropriate formats. 

5. Promote national and state level cooperation in the field of services to patients and families. 

Universal Access to Healthcare 

6. Improve access to services that will facilitate informed decisions about prevention and screening that are legally permissible, and improve access to accurate and timely diagnoses. 

7. Facilitate universal access to high quality healthcare and treatments for rare diseases patients, including surgeries, special diets, transplants, and medical devices, common and orphan medicinal products. 

8. Create policies on rare diseases that promote specific measures in regional / national / international strategies, including identification and support of expert providers as well as their national and international networking. 

Research 

9. Coordinate research efforts on rare diseases through international and national research initiatives. 

10. Build opportunities for effective networking of patient registries. 

Please endorse this

Attached is a draft action plan for A national meeting of civil society tentatively in November. Please comment on the content. The Action Plan will be endorsed/adopted in the meeting if all members agree to the final document

regards

IAPG