The DIA Fellowship Program

Off to Philadelphia (next week)

On behalf of the Cholangiocarcinoma Foundation I have applied for and received a grant to participate in The DIA Patient Advocate Fellowship Program.

This program is designed to develop, strengthen, and support patient collaborations between policy makers, health professionals, industry representatives, and academia.

It also lends patient groups such as ours the opportunity to actively participate and possibly help implement much needed changes in key issues central to patient-centered health care.

As quoted by DIA:

Patient organizations are key stakeholders in helping DIA achieve our mission and vision. Through the Patient Advocate Fellowship Program, DIA works to ensure that the voice of the patient is heard globally in every facet of the life cycle management of pharmaceuticals, medical devices, and related healthcare products. This Program is designed to educate the patient community and actively engage them in the drug development process.

In June, this Program will give twenty-one patient representatives, chosen through a competitive process, opportunities to develop, strengthen, and support collaborations with policymakers, industry, academia, and health professionals by taking part in all facets of DIA 2012: Collaborate to Innovate, our 48th Annual Meeting in Philadelphia, as important contributors to DIA’s annual forum for sharing best practices, stimulating cooperation, and facilitating a two-way dialogue across the entire global healthcare community.

ARPKD/CHF Alliance
Colleen Zak, CEO: http://www.arpkdchf.org/
The ARPKD/CHF Alliance’s mission is to educate, advocate, support, and advance research specific to Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis; its purpose is to “improve the lives of those affected.”

Avery’s Angels
Kayte Thomas, CAO: http://www.averysangels.org/
Avery’s Angels’ mission is to provide emotional, financial, and networking support to families who have or will have a gastroschisis child, to facilitate collaboration between medical professionals to promote best practices, and to encourage research into the cause of this disease.

Canadian Organization for Rare Disorders (CORD)
Maureen Smith, Patient Advocate and Board Member: http://www.raredisorders.ca
CORD is Canada’s national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders.

Cholangiocarcinoma Foundation
Marion Schwartz, Director of Advocacy: http://www.cholangiocarcinoma.org
The Cholangiocarcinoma Foundation provides help for patients and caregivers, advocates for those afflicted and educates those who do not understand. Its mission is to find a cure and improve the quality of life for those affected by bile duct cancer.

HepTREC
Amy Jessop, Director: http://www.heptrec.org
The Delaware Valley Hepatitis Treatment, Research & Education Center in the Department of Health Policy & Public Health at the University of the Sciences in Philadelphia, HepTREC works with community, government, and other academic institutions to reduce the impact of viral hepatitis in the Delaware Valley (PA).

Huntington’s Disease Society of America (HSDA)
Jane Kogan, Programs, Services and Advocacy Manager: http://www.hdsa.org
HSDA is a national non-profit voluntary health agency dedicated to finding a cure for Huntington’s Disease that provides vital support, information and educational services to improve the lives of those affected by HD.

International Cancer Advocacy Network (ICAN)
Marcia Horn, President and CEO: http://www.askican.org
ICAN’s mission is to assist and empower late-stage patients worldwide with cutting-edge information regarding anticancer drugs in clinical trials as well as physician referrals at the patient’s request based on the patient’s reported medical situation.

International WAGR Syndrome Association
Kelly Trout, Health Consultant: http://www.wagr.org
The mission of the International WAGR Syndrome Association is to promote international knowledge and awareness of WAGR syndrome and its complications and treatments, to stimulate research and to reach out to those affected by WAGR syndrome in an effort to improve their lives. (“WAGR” is an acronym for the most common features of this disorder: Wilms’ Tumor, Aniridia, Genito-Urinary Anomalies, and developmental delay/s (R).)

The Lupus Foundation of America
Jessica Gilbart, Director of Patient Services: http://www.lupusdmv.org
The mission of the DC/MD/VA Chapter of The Lupus Foundation of America is to find the causes of and cure for lupus and to provide support and services to all people affected by lupus.

Mass General Cancer Center
Carole Seigel, Patient Advocate: http://www.massgeneral.org/cancer/
The mission of the Massachusetts General Hospital Cancer Center (MGHCC) is to advance knowledge and to rapidly translate discovery into exceptional cancer care; the mission of the
MGHCC Patient & Family Advisory Council is to ensure that the voices of patients and families are represented in an effort to enhance their entire MGHCC experience.

Mastocytosis Society
Kelli Foster, Pediatric Co-Chair: http://www.tmsforacure.org
The Mastocytosis Society, Inc. is dedicated to supporting patients affected by Mastocytosis or Mast Cell Activation Disorders as well as their families, caregivers, and physicians through research, education, and advocacy.

MRSA Survivors Network
Jeanine Thomas, Founder and President: http://www.mrsasurvivors.org
The mission of MRSA Survivors Network is to save lives by providing support, global awareness and education to the community at large and the healthcare industry for methicillin-resistant staphylococcus aureus (MRSA) and other multi drug-resistant organisms and antimicrobial resistance.

National Alliance for Medication Assisted (NAMA) Recovery
Joycelyn Woods, Executive Director: http://www.methadone.org
NAMA Recovery is an organization of methadone patients, healthcare professionals, friends, and associates working together for greater public understanding and acceptance of methadone and buprenorphine treatment; its primary objective is to advocate for the patient in treatment by destigmatizing and empowering medication-assisted treatment patients.

National Dysautonomia Research Foundation (NDRF)
Daniel Smith, President: http://www.ndrf.org
NDRF is dedicated to providing accurate and reliable educational material, support, referral services, and supporting medical research efforts aimed at curing disorders of the autonomic nervous system (dysautonomias).

Nueva Vida (Latin Women with Cancer)
Fedra Sanchez, Senior Programs Manager: http://www.nueva-vida.org
Nueva Vida advocates for and facilitates timely access to state of the art cancer care, including screening, diagnosis, treatment and support, to improve the health outcomes and quality of life for medically underserved Latinas.

Ovarian Cancer National Alliance
Susan Leighton, National Program Director: http://www.ovariancancer.org
The Ovarian Cancer National Alliance is the foremost advocate for women in the US with ovarian cancer. Its mission is to advance the interest of women with ovarian cancer by advocating for increases in research funding, improved health care practices, and life-saving treatment protocols.

Program in Personalized Medicine & Targeted Therapeutics
Nelson Atehortua, Research Scientist and Postdoctoral Fellow: http://p2mt2.com
The mission of the Program in Personalized Medicine & Targeted Therapeutics is to develop the evidence base for, promote informed decision-making about, and accelerate knowledge translation of personalized medicine into meaningful health outcomes.

Soft Bones
Jane Castello, Director of Operations: http://www.softbones.org
The mission of the Soft Bones Foundation is to provide valuable information, education and support for people living with Hypophosphatasia (HPP), their families and caregivers, and to promote research of this rare bone disease through awareness and fund-raising efforts.

Sturge-Weber Foundation (SWF)
Karen Ball, President and CEO: http://www.sturge-weber.org
SWF’s international mission is to improve the quality of life and care for people with Sturge-Weber syndrome and associated Port Wine Birthmark conditions, who we support with collaborative education and advocacy in tandem with translational research to promote effective management and awareness.

United Nations Bone and Joint Decade
Amye Leong, Spokesperson/Author: http://www.boneandjointdecade.org
The Bone and Joint Decade works to reduce the burden and cost of musculoskeletal disorders to individuals, careers and society, and to promote musculoskeletal health and musculoskeletal science worldwide.

Vestibular Disorders Association
Cynthia Ryan, Executive Director: http://www.vestibular.org
The mission of the Vestibular Disorders Association is to serve people with vestibular disorders by providing access to information, offering a support network, and elevating awareness of the challenges associated with these disorders.

I expect this program to be challenging and informative.
You will hear more after my return.

Hugs to all,
Marion