Everylife Foundation and Other Organizations that Address Rare Diseases

I was fortunate to be able to attend an event given by Everylife Foundation in beautiful Tiburon, California to celebrate the passing of the Food and Drug Administration Safety and Innovation Act.  This Act that was passed in July, 2012 has many provisions for patients with rare diseases. This is good news for all patients with a rare disease. 
Some  of the provisions include:
*accelerated development of breakthrough  therapies that show early promise
*Faster Access to Specialized Treatments (FAST)
*Transforming the Regulatory Environment to Accelerate Access to Treatments (TREAT act)
*enhanced FDA consultation with rare disease medical experts
I have attached some links of organizations whose objectives are to advocate for rare diseases,  assist in the development of treatments, help patients, and collaborate with regulatory agencies in various capacity for rare disease patients.  Please refer to the links as I find them very helpful.

http://kakkis.org/
The EveryLife Foundation for Rare Diseases is dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy. We can do more with the science we already have and bring life-saving treatments to millions of people suffering from rare diseases.

http://www.advocacyforpatients.org/

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Patients with Chronic Illness...

Where patients can get free information, advice and advocacy services in areas including but not limited to the following:

•	How to get your own medical records.
•	How to get and keep health insurance.
•	How to get health insurance coverage for particular treatments, drugs, and/or therapies.
	http://mymuscleteam.lotsahelpinghands.com/caregiving/home/ “What can I do to help?” MDA welcomes you to myMuscleTeam®. We are proud to offer this free personal community and care coordination service. http://www.thespeakfoundation.com/pages/ Welcome The Speak Foundation is a non-profit organization dedicated to helping people overcome the challenges of physical disability or a serious health condition, by providing social support, advocacy, and financial assistance both in the United States and internationally (e.g. sponsorship of orphans with disabilities). You can read more about our mission here.
	p.s. I am so surprised with myself for venturing out to this event which was held at night,( I do not usually go out at night). They had really good live music, a great feast of delicious food , many interesting people, and dancing.  I also surprised myself by dancing in my wheel chair.  I continue to amaze myself.  Hope and Mystery.