aHUS Research is important to the aHUS alliance.
In a newsletter from i -ORD , the Indian Organisation for Rare Disease, there is a transcript of Dr A J P Abdul Kalam’s talk to inaugurate the National Conference for Raising Awareness of Rare Diseases. So much of what he says is relevant to aHUS and in particular research , which is the theme for this year’s Rare Disease Day.
Within it Dr Kalam ,who is a former President of India, outlined what he believed to be 10 key components in comprehensive rare disease translational research, and the relationships between them. These are :
- Doctor – Patient Partnership
- Disease Registries
- Biobanks
- Genomics and proteomics platforms
- Community based and Population-wide Studies
- Bioinformatics and high information computing
- Interaction with pharmaceutical companies to facilitate drug discovery
- Personalised treatment based on genotype-phenotype
- e Health and whole of life records
- Regulatory frameworks particularly with regards to specimen and data sharing and return of results.
He said that each component has its own inherent complexities but if effectively integrated they will provide a comprehensive approach to the future management of rare disease, and aid health care providers in delivering services to those affected by rare diseases.
SO RESEARCH SYNERGY FROM THE PARTS PROVIDES BETTER PATIENT OUTCOMES
More about i-ORD at http://www.i-ord.org
Featured image is of Dr AJ P Abdul Kalam ( right ) with Dr Ramaiah Muthyala CEO and President of i-ORD
