Partners for a CPAG: Healthier Future Perspective from an RDCRN Consortium PAG as Research Partner
WHAT I S CPAG? The Coalit ion of Pat ient Advocacy Groups or ‘CPAG’ is t he collect ive represent at ion of pat ient groups affiliat ed w it h t he consort ia of t he Rare Diseases Clinical Research Net w ork ( RDCRN) , a program of ORDR/ NCATS. CPAG is comp o sed of represent at ives from each pat ient group in t he net w ork w ho are t asked w it h being FULL PARTNERS in t he research undert aken by t heir RDCRN consort ium
WHAT I S CPAG? CPAG members influence t he direct ion of t he Rare Diseases Clinical Research Net work as a whole. They part icipat e in net w ork-level discussions and meet ings. The CPAG coalit ion, t hrough it s leadership, is a vot ing member of t he RDCRN St eering Commit t ee.
WHAT I S CPAG? 100+ volunt ary healt h/ pat ient advocacy organizat ions represent ing a variety of rare disorders Ext remely diverse in resources, experience, name recognit ion and infrast ruct ure ( see “ snapshot ” slide) All committ ed t o rare disorders research t hrough t he RDCRN
WHAT CPAG I S NOT CPAG is not an independent pat ient represent at ive group CPAG as an ent it y exist s only in t he cont ext of t he RDCRN CPAG’s focus and act ivit ies are limit ed t o ( and only t o) issues relat ed t o t he RDCRN
CHALLENGES FOR CPAG DI VERSI TY CHALLENGE The member groups t hat comprise t he ent ity collect ively know n as “ CPAG” are incredibly diverse and range from “ Kit chen Table” organizat ions w it h no st aff and lit t le revenue t o mult i-million dollar non-profit corporat ions w it h professional st aff and access t o consist ent funding sources. Many of t he PAGs associat ed w it h t he RDCRN are operat ing w it h ext remely limit ed financial and human resources. H o w o w ca n a n w e m e e t t h e n e e d s o f o f su ch a a d i v e r se co a l o a l i t i o n o n o f o f m e m b e r r g r o r o u p s a n d f u l f i l l o u r r co m m i t m e n t t o b e p a r t n e r s s w i t h RD CR CRN i n v e st st i g a t o r s? s?
CHALLENGES FOR CPAG HAT CHALLENGE The member groups that comprise the entity collectively known as “CPAG” are dedicated professionals with a laser focus on their individual diseases As CPAG represent at ives, w e m ust w ear several different hat s and be sure w e are co considering t he needs of t he RDCRN as a w hole, in addit ion t o our r individual consort rt ia and d gr groups ps
ADDRESSI NG THE CHALLENGES CPAG leadership Chair: Chuck Mohan (UMDF/NAMDC) Co-Chairs: Janet Hieshetter (DRF/DC) Joyce Kullman (VF/VCRC) Cynthia LeMons (NUCDF/UCDC) Work closely and receive guidance from ORDR staff
OPPORTUNI TI ES FOR CPAG 1. Face to Face Meetings 2. Monthly Calls 3. Working Groups of CPAG 4. Committees of the Steering Committee
CPAG MI SSI ON AND VI SI ON CPAG Vision Through collaborat ion, pat ient advocacy groups and researchers can make fast er progress t oward new t reat ment opt ions and cures, which can improve t he lives of all persons and families affect ed by a rare disease. CPAG Mission The Coalit ion for Pat ient Advocacy Groups will promot e collaborat ion bet ween rare disease advocacy organizat ions and t he Rare Diseases Clinical Research Net work in order t o facilit at e bet t er access t o, and earlier benefit from, research conduct ed on rare diseases. As t he pat ient advocacy arm of t he Rare Diseases Clinical Research Net work, CPAG members will use t heir posit ion t o advance t he cause of rare disease research and improved pat ient out com es t hrough t he net work.
PCD & CHD Publication PCD Clinical Low nNO Described Centers 1/1/1994 PCD Timeline Established First Gene Identified 1/1/1999 BestCilia Formed 1st PCD Family Day First Cilia & Mucus GRC Indicates start of 1st PCD/Ciliopathy RDCRN/GDMCC Mtg 1st Genetic for PCD--4 genes Second PCD Gene ID'd PCD & Cri du Chat PCD CC EM Defect Described/ICS Mtg 1/1/1976 1st Case Report Kartagener's Triad Described Microscopy/PCD 32 Genes 1/1/1904 1/1/1933 1/1/1983 1904 2015 1904 1918 1932 1946 1960 1974 1988 2002 1/1/2004 RDCRN Formed 1/1/2002 PCD Foundation Incorporated
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