The Health and Human Services Secretary's Advisory Committee on Genetics, Health, and Society (SACGHS) recently released a final report on the United States oversight system for genetic testing.

 

Read the report: U.S. System of Oversight of Genetic Testing: A Response to the Charge of the Secretary of Health and Human Services (PDF)

 

 

Story by Trish Duque and Amy Moseley

 

We just celebrated year two of the Annual Spur A Cure for PH event at the Rustler's Rooste in Phoenix, Arizona! This year's event was a huge success!

 

The beautiful mountain top views of the valley and the cool desert evening made for the perfect backdrop for our casual outdoor western theme dinner with delicious food, friends, and support for PH. Dr. Jeremy Feldman, Director of Pulmonary Hypertension Program, St. Joseph Hospital & Medical Center, spoke to the attendees about PH research, upcoming treatments, and new hope.    

 

What did we learn? We learned that people want to support causes that touch those they know and love. We learned that people will help, donate and share their experience and expertise if you just ask! We learned that hard work yields terrific results.

 

Last week marked National Volunteer Week. Since the beginning of PHA when three PH patients and a caregiver found each other, this organization has been built upon the spirit of volunteerism and it succeeds because of the generosity of patients and supporters who give their time and talents freely and often. We come together to fight for a better life and, one day, a cure for pulmonary hypertension. So a big thanks to PHA volunteers EVERYWHERE for helping us move forward to a cure and to better living with PH!

To commemorate National Volunteer Week,  PHA's office organized a special Volunteer Appreciation Dinner for our local volunteers who come into our office to help out at our Wednesday Volunteer Nights.  Thanks to the local volunteers, PHA can work more quickly to better serve the PH community.  We also have a lot of fun in the process! Special thanks to our regulars: Carol S., Conchita W., Emily P., Phil L., Henry and Marjorie S., Shannon P., Briseyda R., Arnold S., and Heather K.

Get Involved as a PHA Volunteer in D.C. or Anywhere Around the World!

 

(Globe and Mail) -- Canada is one step closer to an orphan drug plan after the House of Commons voted in favour of a motion that compels government to consider a policy to help those facing unequal access to medicines. Mr. Bell brought the motion forward after his grandson, Dylan Hunter Bell, who suffered from pulmonary hypertension and required continual drug treatment, died on July 14, 2007 -- one day after his 12th birthday. Read article 

 

Next Chat this coming Wednesday:
May 14, Travel and Houston Area Information
Discuss the issues that arise when traveling with PH. Also learn about the city of Houston and the Hilton Americas - Houston where Conference is being held.

 

 

Visit Conference Online Q&A Chats page to learn more and join the chats.