The plethora of rare-disease specific events does require an accessible venue, an investment in-staff training to provide an appropriate level of customer service, and networks within the rare disease space and for-profit sectors to capitalize on the potential opportunities rare disease patients bring to a conference as respected partners and collaborators of new drugs.

Neena discuses her role as a mother and the influence her own mother had on her parenting. a child with a rare disease.

That this rare disease journey may not be the one you planned, but it just may be the best-planned one for you. Neena reflects on the challenges and blessings of the rare disease journey.

The U.S. House Energy and Commerce Committee’s 21st Century Cures initiative is a bipartisan effort to help speed the development and delivery of new health care treatments and cures in America. So what does that mean for Rare Disease patients?

When we arrived in America a year ago, there was much we had to get used to. We had deferred dreams and packed memories up in bright suitcases, and moved toward a sparkling horizon. And although promises lay waiting to be unearthed, the greatest challenge was for my two little boys to feel at home in a new environment.

The role Neena’s father played in creating resilience and determination.

Exhausted and vulnerable, I was worn. Like a festering wound that refused to heal, I was powerless to stop my boys from being poked, prodded, X-rayed, scanned and investigated.