Global Genes is Doing a Survey on Patients' Experience with Getting a Rare Disease Diagnosis

This is survey from Global Genes Project seeking patients with rare disease participation.  Here are their instructions and link.
Thank you.
Tara

Patient Survey: We need your help!

Does your doctor get thumbs up or thumbs down?

Was your or your child’s rare disease diagnosis delayed due to lack of knowledge by doctors?
 Please take 10 minutes to tell us about your experiences with getting a rare and genetic disease diagnosis – your feedback on the process with your doctor could help lots of people with rare diseases!

By providing us with your experiences as a patient with a rare disease, you can help us meet our objectives!

Each participant who completes the survey will be entered into a drawing to win a $200 VISA gift card!
 https://www.engagehealth.com/TakeSurvey.aspx?SurveyID=88MJ4mm

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/

WELCOME to Advocacy for
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.

Camp Craig Allen Fundraiser in Texas

I am posting this so readers in Texas may partake in this upcoming event. Please refer to the link.

WE'RE HAVING CAMP!!!
		Camp Craig Allen successfully held Inaugural Camp Session for Young Adults with Muscular Dystrophy! Our vision has always been one of a wheelchair accessible/barrier-free camp with no age limit. It started with Craig's dream and has been feverishly worked on since Camp Craig Allen formed officially in 2007 as a 501c3 organization. With tireless volunteers, 5 years of fundraising, and an unsteady economy, it was time to move forward and accomplish some of our goals… at least the goal of getting “overlooked” adults to camp. We just couldn’t wait any longer for millions to fall from the sky to build our own facility. It was now, with an opportunity from another… http://www.campcraigallen.org/