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Patricia Weltin, Founder and CEO of Rare Disease United, speaks with Mike and Joyce.
Patty’s two daughters have a rare disease called “Hypermelanosis of Ito” (HI). She is not looking to educate you about HI. Instead she wants you to know that nearly 25% of the United States is affected, directly or indirectly, by some rare disease. Each individual rare disease may be rare (affecting less than 1% of the population), but the experience of having a rare disease is not rare at all. And each individual or family with a rare disease encounters the same hurdles over and over, throughout the country and the world:
We all struggle:
- to achieve a diagnosis
- to find a doctor who knows anything about our rare disease
- to find an appropriate treatment for the condition
- to find others who understand and can provide coaching
- to encourage drug development to alleviate or cure our disease.
Rare Disease United focuses on raising awareness among the general public in Rhode Island and Massachusetts, and helping to facilitate the gathering of people affected by rare diseases so that they can support one another.
Come listen to the great plans Patty has for celebrating Rare Disease Day at the end of February 2014, and learning how you can join together with this energetic group and with other such groups worldwide.
EURORDIS is the leader of Rare Disease Day Worldwide
http://www.eurordis.org/content/participate-rare-disease-day-2014-and-join-together-better-care
The National Organization for Rare Disorders is the official Sponsor of Rare Disease Day in the United States. Their website lists celebrations and projects throughout the United States.
http://rarediseaseday.us
Rare Disease United is a sponsor of Rare Disease Day activities in Rhode Island and Masschusetts
You will find a follow-up interview with Patty about her daughters’ diagnostic odyssey at https://powerfulpatient.org/our-diagnostic-odyssey/
