Make Our Voices Heard
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For most PRP patients and their caregivers, the PRP journey is all consuming. We have to deal with drugs and topical ointments and creams; skin that burns, itches, and flakes; temporary impairment of hearing and vision, loss of energy, and so much more. The personal challenges associated the onset, diagnosis, and initial treatment of PRP make advocacy an unlikely option.
However, for those who want to get involved and take a detour to ADVOCACY, the off ramp is straight ahead.
The PRP Alliance is always looking for patients and caregivers who want to get involved. Learn more about what you can do as a PRP Advocate.
SKIN DISEASE ORGANIZATIONS
International Alliance of Dermatology Patient Organizations — IADPO
Founded on the three pillars of research, advocacy, and support, the International Alliance of Dermatology Patient Organizations (IADPO) is a global alliance dermatology patient organizations working together to provide skin patients with (1) a global voice to change perceptions about the impact of skin conditions and (2) access to care and treatment. MORE
RARE DISEASE ORGANIZATIONS
Genetic and Rare Disease Information Center — GARD
https://rarediseases.info.nih.gov/about-gard/pages/23/about-gard
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. MORE
National Organization of Rare Disorders — NORD
https://rarediseases.org
NORD, a 501(c)(3) organization, is a patient advocacy organization 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. MORE
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. MORE
EveryLife Foundation for Rare Diseases
http://everylifefoundation.org
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. MORE
Rare Disease Legislative Advocates — RDLA
http://everylifefoundation.org/about-us/programs-initiatives/
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. MORE
CLINICAL RESEARCH ADVOCACY
Center for Information and Study on Clinical Research Participation — CISCRP
https://www.ciscrp.org
The mission of the Center for Information and Study on Clinical Research Participation (CISCRP), a 501(c) (3) independent national nonprofit organization founded in 2003, is to (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. MORE
DERMATOLOGY ORGANIZATIONS
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. MORE
Society for Investigative Dermatology
http://www.sidnet.org
The Society for Investigative Dermatology was born out of a vision to serve a segment of science previously unrepresented by the medical societies of the United States: investigative dermatology. The founders saw a need for an organization with a devotion to cutaneous investigation, rather than clinical work, and to promote investigative dermatology to a fully respected position among the medical specialties. MORE
Society of Dermatology Physician Assistants
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. MORE
Dermatology Nurses Association
https://www.dnanurse.org
The Dermatology Nurses Association is at the hub of a vibrant global network of dermatology care providers. Health care professionals from around the world access DNA’s knowledge and expertise in dermatology care through a wide variety of high quality educational resources including a premiere journal, international conferences and cutting edge technology. MORE
American Society of Dermatopathology
http://www.asdp.org
The American Society for Dermatopathology was founded in 1962 to improve the quality of dematopathology and the treatment of skin diseases. The ASDP serves as the hub of professional knowledge in the practice of Dermatopathology; promoting advances in the field, developmental opportunities, a platform for vigorous debate, and tools to share best practices among fellow practitioners. MORE