Patient Resources

Policies and Guidelines

Policies relating to rare diseases are significant in its ability to transform patient lives. By formulating and implementing pro-rare disease policies; patients will be able to access quality treatment and care, better access to drugs and clinical trials, multidisciplinary care and psychosocial support.

India is still in the nascent stage of a clearcut National Rare Disease Policy guidelines. Since health is a state subject, each state has come up with a set of policies to improve patient care and access to treatment.

It is also significant that rare diseases like the blood and bleeding disorders, muscular dystrophies and multiple sclerosis have been included in the Rights of People with Disabilities Act 2016. This will not only improve and strengthen healthcare practices but also provide legal support to children and adults in accessing education and other services in the country.

Support Groups

Patient support groups are important for advocacy, activism and even pushing key research forward. In Europe and the United States, patient support groups have played a key role in bringing in new drugs and treatment. For ex: The Alkaptonuria Society (AKU Society) in the UK played a major role in researching drugs for repurposing towards AKU treatment.

Patient support groups also bring together patients across the country and provide a sense of unity and dispel the feeling of being alone in the fight against rare diseases. Patient support groups have been active in India in advocating for rare diseases and even shaping policy outcomes.

Resources

Title / Link	Category
National Policy for Treatment of Rare Diseases [PDF]	Guidelines
National Guidelines on Hemoglobinopathies in India [PDF]	Guidelines
Rights of People with Disabilities Act 2016 [PDF]	Guidelines
Blood Guidelines India [PDF]	Guidelines
Karnataka Day Care Centres Guidelines [PDF]	Guidelines
Karnataka Antenatal Screening for Thalassemia Guidelines [PDF]	Guidelines
An Ordinary Life With a Rare Disease: Battle for Drug Discovery	Rare disease updates
18 Things People Need to Learn on World Rare Disease Day	Rare disease updates
Learn about the Different Phases of a Clinical Trial	Rare disease updates
19 Celebrities Who Stood Up for Chronic Illness in 2017	Rare disease updates
Breakthrough in Treating Huntington’s Disease	Rare disease updates
Gene editing isn’t about designer babies	Rare disease updates
The Loss of Their Son Pushed This Couple to Help All Those with This Rare Disease	Rare disease updates
Transformative treatment for Scleroderma	Rare disease updates
A boy with a rare disease gets new skin, thanks to gene-corrected stem cells	Rare disease updates
Study suggests new therapy for Gaucher disease	Rare disease updates
Rare disease action forum	General Rare disease patient forums
Rare connect	General Rare disease patient forums
General for chronic and rare disease patients and caregivers	General Rare disease patient forums
Patients like me	General Rare disease patient forums
Some stats on rare diseases	General Rare disease patient forums
Castleman disease support for patients and physicians	Specific Rare disease help forums
For thalassemia patients, friends, physicians, researchers	Specific Rare disease help forums
Connects muscular dystrophy patients to local communities	Specific Rare disease help forums
https://www.dfsg.org.ukDuchenne muscular dystrophy support group	Specific Rare disease help forums
All patients with primary immunodeficiency can connect here	Specific Rare disease help forums
Support for patients with alkaptonuria	Specific Rare disease help forums
Multiple sclerosis society in India with city chapters	Specific Rare disease help forums