Did You Wear Your Purple Yesterday?

Anthony Heard sporting his purple tie...

Yesterday was Rare Disease Day. Did you wear your purple to show support for ITP, one of the many rare diseases that plague our world?

Anthony Heard has been posting pictures on the ITP Foundation Facebook page. Take a look and see how ITPers have been sporting their purple.
https://www.facebook.com/pages/ITP-Support-Association/195007237228999

In the United States, sometimes people with rare diseases do not have the funds to obtain the treatments they need. There is an organization called NORD (National Organization for Rare Disorders) that may be able to help.

The following is some information from the NORD Website (http://www.rarediseases.org)

WHAT IS A RARE DISORDER?

Any disease affecting fewer than 200,000 Americans is considered rare. There are nearly 7,000 such diseases affecting nearly 30 million Americans. NORD is here to represent all patients and families in the U.S. affected by rare diseases.

WHAT IS A RARE DISORDER?

Any disease affecting fewer than 200,000 Americans is considered rare. There are nearly 7,000 such diseases affecting nearly 30 million Americans. NORD is here to represent all patients and families in the U.S. affected by rare diseases.

NORD PROGRAMS AND SERVICES

NORD provides information for patients and families, mentoring for patient organizations, advocacy for the rare disease community, research grants, and patient assistance programs.

MEDICAL ASSISTANCE PROGRAMS

http://www.rarediseases.org/patients-and-families/patient-assistance

NORD partners with pharmaceutical and biotechnology companies to ensure that certain vital medications are available to uninsured or under-insured individuals. NORD’s programs have set the standard for fairness, equity, and unbiased eligibility and earned high marks from patient communities, pharmaceutical companies, healthcare professionals, government officials, and the public.

NORD also administers co-pay assistance programs for people who can’t afford their insurance co-pays; early access programs that, following FDA guidelines, allow patients with serious or life-threatening diseases to access investigational products under certain conditions; and travel assistance programs, since patients with rare diseases often must travel great distances to participate in clinical trials.