Coordinated Effort is Important in Fight Against Rare Diseases

by Vishnuprasad on March 21, 2015 at 3:45 PM
Coordinated Effort is Important in Fight Against Rare Diseases

Former Indian President A.P.J Abdul Kalam has called for a coordinated effort at the national-level for more research into understanding rare diseases in the country.

As there were few cases of rare diseases in the country, health ministries did not consider them a public health issue, observed the former President. He was participating in the conference on Raising Awareness on Rare Diseases at Hyderabad on Friday.


"There is a need for a whole ecosystem consisting of doctors, a registry to record the prevalence of rare diseases, bio-banks, support groups, more research on drug discovery and of course a regulatory framework. Each component is complex and there is a lot of work ahead," Dr. Kalam pointed out.

A majority of ailments like Amyotrophic Lateral Sclerosis (ALS), muscular dystrophy, congenital heart diseases, sickle-cell anaemia and many more come under the category of rare diseases. Health experts at the conference pointed out that there was also a need to promote development of drugs for rare diseases.

Members of the Indian Organisation for Rare Diseases (IORD), which organised the conference, pointed out that India was yet to adopt a definition for rare diseases. "We do not have trained doctors or diagnostic facilities to identify the ailments. There are no incentives for pharma sector to develop drugs for rare diseases. Also, it's tough to find information on rare diseases for families and even professionals," said IORD president Ramaiah Muthyala.

Source: Medindia
Font : A-A+



Latest Indian Health News

BMC's Rs 1,500-Crore 'CM Health At Doorstep' Scheme for Mumbai
The Rs 1,500 crore 'Chief Minister Health at Doorstep' program aims to cut expenses and conduct blood tests for those aged 60+.
WHO Team Probes Mysterious Disease in Bihar
In Bihar, a mysterious ailment named "Langda fever" by locals has emerged, causing patients to recover from fever but struggle to walk due to joint pain.
Tobacco's Devastating Impact on India Revealed
Upon analyzing the years of life lost due to cancer, the team discovered that the four avoidable risk factors led to an annual loss of over 30 million years of life.
Poor Air Quality in Delhi Worsens Asthma Risk
Over the past three to four weeks in Delhi, there has been an increase of 20-30% in patients with recurring cough and upper respiratory tract infections.
First Lactarium Launches in Uttar Pradesh's Taj City
Premature infants with gastrointestinal complications and metabolic disorders stand to benefit the most from this Lactarium initiative.
View All
This site uses cookies to deliver our services.By using our site, you acknowledge that you have read and understand our Cookie Policy, Privacy Policy, and our Terms of Use  Ok, Got it. Close

Coordinated Effort is Important in Fight Against Rare Diseases Personalised Printable Document (PDF)

Please complete this form and we'll send you a personalised information that is requested

You may use this for your own reference or forward it to your friends.

Please use the information prudently. If you are not a medical doctor please remember to consult your healthcare provider as this information is not a substitute for professional advice.

Name *

Email Address *

Country *

Areas of Interests