Society of Dermatology Physician Assistants

07.04.02 — Society of Dermatology Physician Assistants

Society of Dermatology Physician Assistants (SOPA)

http://www.dermpa.org

The Society of Dermatology Physician Assistants (SDPA) is a 501c6 non-profit professional organization composed of members who provide dermatologic care or have an interest in the medical specialty of dermatology. Its Fellow members are PAs who provide medical services with the collaboration of a board certified dermatologist. Founded in 1994, the SDPA currently has more than 2,700 members

Their mission: Advancing the care of patients through the education and empowerment of Dermatology PAs.

Advocacy opportunities

❋   Devour the SOPA website

❋   Appreciate the value of Dermatology PA’s

❋   Confirm whether or not your dermatologist or the clinic employs a dermatology physician assistant. Make sure they are aware of PRP

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Use the contact form below to request information about becoming a National or Global PRP Advocate

American Association of Dermatology

07.04.01 — American Association of Dermatology

American Academy of Dermatologists — AAD

https://www.aad.org

The American Academy of Dermatology was founded in 1938. It is the largest, most influential and representative dermatology group in the United States. With a membership of more than 19,000, it represents virtually all practicing dermatologists in the United States, as well as a growing number of international dermatologists. The PRP Alliance has attended three of the last four AAD annual meetings.

Advocacy opportunities

❋   Participate as a PRP and Rare Disease Advocate at the AAD Legislative Conference in Washington DC. in September 2017. Learn More

❋   Represent the PRP Alliance at the AAD Annual Meeting in San Diego in March 2018

❋   Reach out to a state or local dermatology society.

❋   Make yourself available as a patient representative on an AAD work group.

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Use the contact form below to request information about becoming a National or Global PRP Advocate

Center for Information and Study on Clinical Research Participation

From the Editor…

There is a point in the creation of every organization where someone has to decide on the name. For me, the PRP Alliance was easy. Even the PRP Survival Guide was effortless. But who thought that the Center for Information and Study on Clinical Research Participation would even fit on a business card?

And then there is the acronym. How do you pronounce CISCRP? Fortunately, I’ve attended meetings with people who work at CISCRP headquarters in Boston. Those folks don’t have any problem pronouncing CISCRP.

CIS as in SISter and CRP as in crypt

Now that I have gotten that off my chest, CISCRP is a terrific organization with terrific people who make terrific things happen.

Initially it was their advocacy of lay language and non-technical summaries that attracted me to their website. As a patient with a ultra-rare skin disorder, I was continually frustrated by Abstracts and Case Reports that were impossible to decipher. CISCRP shared my frustration. Unlike me, they were doing something about it.

Ken Getz, CISCRP Founder

I ordered and read The Gift of Participation by CISCRP founder, Ken Getz. His “Guide to Making Informed Decisions About Volunteering for a Clinical Trial” was much more than I had expected. The result was a bittersweet realization that there is little PRP research of any consequence. On the other hand there was a  glimmer of hope coming from  Sidney Kimmel Medical College at Thomas Jefferson University in Philadelphia. Since October 2012, genetic and clinical research has been underway with predictable challenges of recruiting participants.

CISCRP is a 501(c) (3) independent national nonprofit organization founded in 2003 with a four-part mission:

(1) Educate, inform and empower patients, the public, medical and research professionals, the media and policymakers about clinical research participation and what it means to be an active participant in the process.

(2) Promote greater awareness and understanding of clinical research participation and the role that it plays in public health

(3) Facilitate more effective collaboration among all members of the clinical research enterprise

(4) Provide resources for the research community to better understand the study volunteer.

As a PRP patient advocate I have been participating on the Clinical Trials Awareness and Accessibility Patient Advisory Board funded by TransCelerate and managed by CISCRP staff. When the dust settles on the CRAA Advisory Board I hope be become an Editorial Panelist and actually be involved in translating medical jargon into lay language. What a hoot for a 71-year-old retired publisher.

Advocacy opportunities for the PRP Community:

(1)  Go to the CISCRP website and devour it. .

(2)  Participate in webinars

(3)  Attend “local” conferences sponsored by CISCRP and share what you learn with the PRP Facebook and PRP RareConnect communities.

(4)  Then take what you learn and help Thomas Jefferson  University increase participation in their ongoing PRP Research.

CISCRP

Rare Disease Legislative Associates

RDLA is a collaborative organization designed to support the advocacy of all rare disease groups. RDLA works to empower the individual to become an advocate by providing informational meetings, legislative resources, advocacy tools, and special events that support organizations and advocates working to promote rare disease legislation. The goal of RDLA is to bring the rare disease community together, grow the patient advocacy community and work collectively to ensure that the many voices of patients with rare diseases have an opportunity to be heard in state government and on Capitol Hill.

Advocacy opportunities

❋   Support legislative outreach efforts

❋   Attend the annual Rare Disease Week on Capitol Hill (February 27-March 3, 2018)

❋   Participate in RDLA webinars and share what you learn with the PRP community.

❋   Volunteer for patient advisory boards

❋   Attend “local” conferences sponsored by EveryLife and share what you learn with the PRP community.

Rare Disease Legislative Associates

 

EveryLife Foundation For Rare Diseases

The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy. Currently, there are fewer than 400 approved treatments for 7000 rare diseases affecting more than 30 million Americans.

The science exists for many of these diseases to be treated; however, treatments may never be developed because of roadblocks in the development process, such as a lack of investment and a challenging regulatory environment.

The Foundation works with patient organizations, Industry, Academic Scientists, the Food and Drug Administration (FDA), and National Institutes of Health (NIH) to improve the clinical development process through our Rare Disease Workshop Series, Rare Disease Legislative Advocates (RDLA) events, and legislation. The PRP Alliance supports the efforts of the EveryLife Foundation for Rare Diseases.

Advocacy opportunities

❋   Devour the EveryLife Foundation website.

❋   Learn about Rare Disease Legislative Advocates

❋   Learn about EveryLife Foundation Community Congress

❋   Participate in EveryLife Foundation events in your area

❋    Learn about OPEN ACT (H.R. 1223  and S. 1509)

❋    Support OPEN ACT (H.R. 1223 and S. 1509)

EveryLife Foundation For Rare Diseases

Genetic and Rare Disease Information Center

From the editor…

The Genetic and Rare Diseases (GARD) Information Center is a program of the National Center for Advancing Translational Sciences (NCATS) and funded by two parts of the National Institutes of Health (NIH): NCATS and the National Human Genome Research Institute (NHGRI). GARD provides the public with access to current, reliable, and easy to understand information about rare or genetic diseases in English or Spanish.

Who can GARD help with information?


✽  People who have rare or genetic diseases.
✽  Parents, family members, and friends of someone with a rare or genetic disease.
✽  Doctors, nurses, genetic counselors, other health care providers, social workers, and teachers who work with people with rare or genetic diseases.
✽  Scientists who are studying rare or genetic diseases and need information for their research or for people taking part in studies.
✽  Community leaders who are helping people find resources about rare or genetic diseases.
✽  Advocacy groups who want up-to-date disease information for their websites.
✽  Members of the general public who want to learn more about a rare or genetic disease.

Where can GARD articles be found in the PRP Survival Guide?

GARD is an important resource for the PRP Survival Guide, the PRP Alliance and the worldwide PRP community.

Chapter 2 — Diagnosing PRP

✽   ICD Coding for Rare Diseases — GARD

Chapter 3 — Treating PRP

✽   How to Find a Disease Specialist — GARD

Chapter 4 — Daily Life

✽   Using Dietary Supplements Wisely — GARD

✽   Support for Patients and Families — GARD

✽   Finding Financial Aid — GARD

Chapter 6 — Research

✽   How to Get Involved in Research — GARD

✽   About Clinical Research — GARD

Genetic and Rare Disease Information Center

EURORDIS

07.02.01 — EURORDIS

EURORDIS

http://www.eurordis.org

EURORDIS-Rare Diseases Europe is a unique, nonprofit alliance of over 700 rare disease patient organisations from more than 60 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe. By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilizing the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services. The PRP Alliance actively support the PRP Community on RareConnect, an initiative of EURORDIS.

Advocacy opportunities

❋   Support Rare Disease Day in 2018 (February 28).

❋   Join and promote participation the the PRP RareConnect Community, RareConnect is an initiative of EURORDIS.

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Use the contact form below to request information about becoming a National or Global PRP Advocate

National Organization of Rare Disorders

The National Organization of Rare Disorders (NORD) is dedicated to individuals with rare diseases and the organizations that serve them.  NORD, along with its more than 260 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. The PRP Alliance is a member of NORD.

What they say about themselves:

The vision that drives all NORD initiatives is:

❋  A national awareness and recognition of the challenges endured by people living with rare diseases;

❋  A culture of innovation that supports basic and translational research to create diagnostic tests and therapies for all rare diseases;

❋  Access for all patients to the diagnostics and therapies that will extend and improve their lives.

❋  A regulatory environment that encourages development and timely approval of safe, effective diagnostics and treatments.

Advocacy Opportunities

❋  The PRP Survival Guide has agreed to assist NORD in the revision of the information about PRP contained in NORD’s Rare Disease Database report. Upon completion, NORD will publicize the fact that an update has been done.

According to Mary Dunkel, Vice President of Educational Initiatives, “The revision of a Rare Diseases Report tends to drive traffic to the report. Since our PRP report links to the PRP Alliance, that would also drive traffic to the Alliance website. Mary further notes that approximately one million visits are made each month to NORD’s website and 85% of visitors go first to a Rare Disease Database report.

Marsha Lanes, NORD’s medical editor will serve as liaison and provide PRP Survival Guide managing editor Bill McCue will guidelines for the revision.

❋  Participate in NORD’s Rare Diseases and Orphan Products Breakthrough Summit (October 16-17). Historically the NORD Summit has featured over 20 speakers from the FDA, participation from over 80 patient organizations and the Pharma/Biotech industry’s foremost experts in orphan product innovation, investment and commercialization.

The 2017 NORD Summit is your opportunity to collaborate with the top leaders from the FDA, National Institutes of Health, industry, patient groups, payers and research institutions to address the progress and innovations in rare disease diagnosis, treatment, patient engagement and market access of orphan products.

❋  Participate in Rare Disease Day 2018 (February 28). The PRP Alliance domain was registered in February 2013 in solidarity with Rare Disease Day.

❋   PRP patient advocates should subscribe to the NORD newsletter. SUBSCRIBE NOW.

❋   Support NORD legislative efforts by communicating with lawmakers in Congress. This is can be a tough one for those who who feel disenfranchised. We all need to do more.

National Organization of Rare Disorders