The Community of Hope Patient Scholarship Fund

History of the Patient Scholarship Fund

Since PHA's International PH Conference was first organized in 1994, patients have been able to attend at far less than the actual cost to PHA. In past years, the patient registration fee has been approximately 20 percent of the per-registrant cost to PHA.

Unfortunately, even with this blanket benefit for patients, many cannot afford to attend. Hotel costs and travel costs, particularly for those requiring oxygen during flights, add up prohibitively. The fact is that our members live with a disease that adds significantly, and sometimes catastrophically, to the cost of living while often reducing their ability to work.

To help as many patients as possible have the opportunity to learn and network at PHA's conferences, PHA sought funds from Ronald McDonald House Charities and launched the Patient Scholarship Fund in 2000. PHA raised between $50,000 and $60,000 in scholarship money for the 2000, 2002 and 2004 Conferences. These funds directly helped 40 to 50 patients attend each event who otherwise might not have done so.

By 2004, PHA's International PH Conference had become the largest PH meeting in the world. It had integrated well-received Scientific Sessions, bringing additional value to the medical community. Evaluations were exceptional. However, while the event was continuously growing in impact, it became apparent that more needed to be done to assist patients with the cost of attendance. PHA set a target to raise the Patient Scholarship Fund to $150,000 for the 2006 Conference, and PHA successfully doubled the number of 2004 scholarship recipients. Since 2006, the Patient Scholarship Fund has allowed us to make attendance possible for hundreds of people.

The Patient Scholarship Fund Today

As the patient population has continued to grow, so too does the demand for scholarships. Since 2001, the patient community in the U.S. has grown from about 3,000 to between 20,000 and 30,000. The scholarship program has also become better known during that time. This energy is reflected in the growth of applicants and recipients between 2006 and 2014. With continuing growth and interest in the field, applications are expected to continue to increase in 2016.

  • 2006 International PH Conference: 145 applicants/120 scholarships awarded
  • 2008 International PH Conference: 267 applicants/220 scholarships awarded
  • 2010 International PH Conference: 393 applicants/242 scholarships awarded
  • 2012 International PH Conference: 412 applicants/372 scholarships awarded
  • 2014 International PH Conference: 332 applicants/257 scholarships awarded

PHA has four goals for the Patient Scholarship Fund:

  1. To keep pace with the growth of the patient community
  2. To achieve financial stability for the program
  3. To offer patients timely notice of scholarship approval to increase benefit of aid to patients and improve program planning for PHA staff
  4. To enable a greater number of international PH association leaders to attend and exchange best practices

Supporting the Fund

The Patient Scholarship Fund is supported by many members of the PH community, including patients, caregivers, medical professionals, corporations and PHA staff, and fills the gap for as many qualified patient applicants in need as we can support. Companies or groups who give a minimum of $20,000 will have a Community of Hope Patient Scholarship Fund created in their name.

Based upon need, PHA Conference scholarships are awarded at three levels to cover the cost of the following:

  • Registration
  • Registration and room
  • Registration, room and transportation

All scholarship decisions are made by an anonymous awards committee, composed of patients and caregivers. Funders are blind to the awards process and have no role in evaluating or selecting recipients. Participation in the Patient Scholarship Fund will not count toward a funder's total sponsorship level.

Thank you, 2016 Conference Scholarship Fund Contributors:

  • Actelion Community of Hope Patient Scholarship Fund (2)
  • Bayer HealthCare Community of Hope Patient Scholarship Fund
  • Barbara L. Smith Scholarship Endowment Fund
  • Gilead Sciences, Inc. Community of Hope Patient Scholarship Fund
  • Jeanine Hart California Patient Scholarship Fund

Past Scholarship Funds Include:

  • The Actelion Community of Hope Patient Scholarship Fund
  • The Bayer Community of Hope Patient Scholarship Fund
  • The Caremark Community of Hope Scholarship Fund
  • The CoTherix Community of Hope Patient Scholarship Fund
  • The Gilead Community of Hope Patient Scholarship Fund
  • The GSK Community of Hope Patient Scholarship Fund
  • The Myogen Community of Hope Patient Scholarship Fund
  • The Novartis Community of Hope Scholarship Fund
  • The Pfizer Community of Hope Patient Scholarship Fund
  • The PHA Staff Community of Hope Scholarship Fund
  • The Rochester, MN Gala Community of Hope Scholarship Fund
  • The UCSD PH Walk-a-Thon Community of Hope Scholarship Fund
  • The United Therapeutics Community of Hope Patient Scholarship Fund

Words from Past Scholarship Recipients:

"You have provided the most wonderful experience…a wealth of opportunity to learn more about our disease and the unforgettable chance to be around hundreds of smiling faces that all said the same thing: 'I understand and I'm so glad you came.' Thank you with all my heart."

"We had a wonderful time. I have been able to talk to my doctors better with the information that I learned and my daughter has talked to people at school. She wore the PHA shirt to school and found out that her science teacher’s sister has PH. She is now her favorite teacher and they talk about PH often. I found out the other day that her biggest fear is me dying and she said that she wasn’t as scared after learning so much at Conference. Thank you so much from both of us."

"I just want to say thank you for the scholarship. Without it, I could not have gone. I came back with a positive attitude about my PH."

Contact

To support the Patient Scholarship Fund or find out more about the 2016 International PH Conference and Scientific Sessions, contact Sarah Leonard at SarahL@PHAssociation.org or 301-565-3004 x763.



PHA thanks the sponsors of the International PH Conference and Scientific Sessions:

Diamond:

Actelion Bayer Gilead

Platinum:

 

Silver:

Accredo Specialty Pharmacy Reata Pharmaceuticals United Therapeutics logo

Bronze:

SteadyMed Therapeutics

General:

Bellerophon Therapeutics Eiger BioPharmaceuticals


To support the International PH Conference and Scientific Sessions, please visit the sponsorship page.


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