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RARE DISEASE WEEK
New dates, new formatsame life-changing experience! Virtual Rare Disease Week on Capitol Hill brings together rare disease community members from across the country to be educated on federal legislative issues, meet other advocates, and share their unique stories withlegislators.
RARE SCHOLARSHIP
The EveryLife Foundation for Rare Diseases is a 501 (c) (3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures. RARE DISEASE LEGISLATIVE ADVOCATES Rare Disease Legislative Advocates (RDLA) is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations. RDLA believes that every voice matters and that patients are the key to changingpublic policy.
RDLA TEAM | EVERYLIFE FOUNDATION FOR RARE DISEASES The EveryLife Foundation for Rare Diseases is a 501 (c) (3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development ofRARE GIVING
Rare Giving is a program of the EveryLife Foundation for Rare Diseases to support individual rare disease patients as well as organizations that engage patients, caregivers and others in the community in advocacy and public policy. We believe it is critical for policymakers and regulators to hear directly from rare disease patients andcaregivers.
BURDEN OF RARE DISEASE STUDY Annie Kennedy, MS, Chief of Policy and Advocacy at EveryLife Foundation for Rare Diseases, provides an overview of the National Economic Burden of Rare Disease Study during the Rare Disease Congressional Caucus Briefing on Feb. 25, 2021. Annie provides background on the study, the key data from the study, and what these data mean to the community.RARE ACROSS AMERICA
Speeding Therapy Access Today (STAT) Act, S. 670/H.R 1730: The STAT Act is a bipartisan bill that was created with the input of the rare disease community aimed at improving the development of and access to therapies for the rare disease community.Most notably, this bill would create an FDA Center of Excellence for Rare Diseases. RARE DISEASE CONGRESSIONAL CAUCUS A congressional caucus is a group of members of the United States Congress that meets to pursue common legislative objectives. Formally, caucuses are formed as congressional member organizations (CMOs) through the United States House of Representatives and governed under the rules of that chamber. There are hundreds of Caucuses. TIP SHEET LOBBYING FOR RARE DISEASE NONPROFIT The Lobbying Disclosure Act of 1995 is a federal lobbying statute administered by Congress that applies to legislative and executive branch contacts. LDA requires registration and disclosure of certain lobbying activities, including issues lobbied, individual lobbyists, and lobbying costs. Under LDA, a “lobbyist” is an individual who,for
EVERYLIFE FOUNDATION FOR RARE DISEASESNEWSPOLICYPROGRAMSEVENTSRESOURCESBURDEN STUDY The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.RARE DISEASE WEEK
New dates, new formatsame life-changing experience! Virtual Rare Disease Week on Capitol Hill brings together rare disease community members from across the country to be educated on federal legislative issues, meet other advocates, and share their unique stories withlegislators.
RARE SCHOLARSHIP
The EveryLife Foundation for Rare Diseases is a 501 (c) (3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures. RARE DISEASE LEGISLATIVE ADVOCATES Rare Disease Legislative Advocates (RDLA) is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations. RDLA believes that every voice matters and that patients are the key to changingpublic policy.
RDLA TEAM | EVERYLIFE FOUNDATION FOR RARE DISEASES The EveryLife Foundation for Rare Diseases is a 501 (c) (3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development ofRARE GIVING
Rare Giving is a program of the EveryLife Foundation for Rare Diseases to support individual rare disease patients as well as organizations that engage patients, caregivers and others in the community in advocacy and public policy. We believe it is critical for policymakers and regulators to hear directly from rare disease patients andcaregivers.
BURDEN OF RARE DISEASE STUDY Annie Kennedy, MS, Chief of Policy and Advocacy at EveryLife Foundation for Rare Diseases, provides an overview of the National Economic Burden of Rare Disease Study during the Rare Disease Congressional Caucus Briefing on Feb. 25, 2021. Annie provides background on the study, the key data from the study, and what these data mean to the community.RARE ACROSS AMERICA
Speeding Therapy Access Today (STAT) Act, S. 670/H.R 1730: The STAT Act is a bipartisan bill that was created with the input of the rare disease community aimed at improving the development of and access to therapies for the rare disease community.Most notably, this bill would create an FDA Center of Excellence for Rare Diseases. RARE DISEASE CONGRESSIONAL CAUCUS A congressional caucus is a group of members of the United States Congress that meets to pursue common legislative objectives. Formally, caucuses are formed as congressional member organizations (CMOs) through the United States House of Representatives and governed under the rules of that chamber. There are hundreds of Caucuses. TIP SHEET LOBBYING FOR RARE DISEASE NONPROFIT The Lobbying Disclosure Act of 1995 is a federal lobbying statute administered by Congress that applies to legislative and executive branch contacts. LDA requires registration and disclosure of certain lobbying activities, including issues lobbied, individual lobbyists, and lobbying costs. Under LDA, a “lobbyist” is an individual who,for
NEWS | EVERYLIFE FOUNDATION FOR RARE DISEASES May 28, 2021. / in Front Page, News, STATAct / by Britta Vanderlinden. The EveryLife Foundation for Rare Diseases delivered letters of support for the Speeding Therapy Access Today Act of 2021 H.R. 1730/S. 670, or STAT Act, signed by 110 rare disease partners. The letters were delivered to Committtee leadership as well as the bill’s lead RARE GIVING 2022 GRANT APPLICATIONS ARE NOW OPEN This newly expanded program offers support for policy engagement tools and resources (Applications close October 31, 2021) The EveryLife Foundation for Rare Diseases believes it is critical for policymakers and regulators to hear directly from rare disease patients and caregivers. That’s why Rare Giving, a program of the Foundation, supports individual rare disease patients andRARE GIVING
Rare Giving is a program of the EveryLife Foundation for Rare Diseases to support individual rare disease patients as well as organizations that engage patients, caregivers and others in the community in advocacy and public policy. We believe it is critical for policymakers and regulators to hear directly from rare disease patients andcaregivers.
EVENTS SCHEDULE
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development ofRARE ACROSS AMERICA
Speeding Therapy Access Today (STAT) Act, S. 670/H.R 1730: The STAT Act is a bipartisan bill that was created with the input of the rare disease community aimed at improving the development of and access to therapies for the rare disease community.Most notably, this bill would create an FDA Center of Excellence for Rare Diseases. WEBINARS | EVERYLIFE FOUNDATION FOR RARE DISEASES The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures. STAT ACT FOR RARE DISEASE DEVELOPMENT The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of TIP SHEET DIVERSITY AND INCLUSION The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of CONGRESS APPROVES A FOUR YEAR EXTENSION OF THE RARE The rare disease community realized an important policy victory as Congress approved a four year extension of the Rare Pediatric Disease Priority Review Voucher (PRV) Program, capping off a year of community driven advocacy for the Creating Hope Reauthorization Act. The EveryLife Foundation for Rare Diseases applauds the critical Congressional action that led to the SOCIAL SECURITY DISABILITY PROGRAMS AVAILABLE TO ELIGIBLE If you have become disabled because of a rare disease, you may not be aware that the Social Security Administration (SSA) administers more than one program for disabled individuals. Each program has its own qualifications and criteria that must be met, and you have to meet the specifications set forth in the SSA Blue Book, which is a medical guide, to be declared fully disabled. EVERYLIFE FOUNDATION FOR RARE DISEASESNEWSPOLICYPROGRAMSEVENTSRESOURCESBURDEN STUDY The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures. ABOUT US | EVERYLIFE FOUNDATION FOR RARE DISEASES About Us. The EveryLife Foundation for Rare Diseases is a 501 (c) (3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.RARE DISEASE WEEK
New dates, new formatsame life-changing experience! Rare Disease Week on Capitol Hill brings together rare disease community members from across the country to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators.RARE SCHOLARSHIP
The EveryLife Foundation for Rare Diseases is a 501 (c) (3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures. RARE DISEASE LEGISLATIVE ADVOCATES Rare Disease Legislative Advocates (RDLA) is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations. RDLA believes that every voice matters and that patients are the key to changingpublic policy.
RDLA TEAM | EVERYLIFE FOUNDATION FOR RARE DISEASES The EveryLife Foundation for Rare Diseases is a 501 (c) (3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development ofRARE ACROSS AMERICA
Speeding Therapy Access Today (STAT) Act, S. 670/H.R 1730: The STAT Act is a bipartisan bill that was created with the input of the rare disease community aimed at improving the development of and access to therapies for the rare disease community.Most notably, this bill would create an FDA Center of Excellence for Rare Diseases.RARE GIVING
Rare Giving is a program of the EveryLife Foundation for Rare Diseases to support individual rare disease patients as well as organizations that engage patients, caregivers and others in the community in advocacy and public policy. We believe it is critical for policymakers and regulators to hear directly from rare disease patients andcaregivers.
STAT ACT FOR RARE DISEASE DEVELOPMENT The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of RARE DISEASE CONGRESSIONAL CAUCUS A congressional caucus is a group of members of the United States Congress that meets to pursue common legislative objectives. Formally, caucuses are formed as congressional member organizations (CMOs) through the United States House of Representatives and governed under the rules of that chamber. There are hundreds of Caucuses. EVERYLIFE FOUNDATION FOR RARE DISEASESNEWSPOLICYPROGRAMSEVENTSRESOURCESBURDEN STUDY The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures. ABOUT US | EVERYLIFE FOUNDATION FOR RARE DISEASES About Us. The EveryLife Foundation for Rare Diseases is a 501 (c) (3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.RARE DISEASE WEEK
New dates, new formatsame life-changing experience! Rare Disease Week on Capitol Hill brings together rare disease community members from across the country to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators.RARE SCHOLARSHIP
The EveryLife Foundation for Rare Diseases is a 501 (c) (3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures. RARE DISEASE LEGISLATIVE ADVOCATES Rare Disease Legislative Advocates (RDLA) is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations. RDLA believes that every voice matters and that patients are the key to changingpublic policy.
RDLA TEAM | EVERYLIFE FOUNDATION FOR RARE DISEASES The EveryLife Foundation for Rare Diseases is a 501 (c) (3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development ofRARE ACROSS AMERICA
Speeding Therapy Access Today (STAT) Act, S. 670/H.R 1730: The STAT Act is a bipartisan bill that was created with the input of the rare disease community aimed at improving the development of and access to therapies for the rare disease community.Most notably, this bill would create an FDA Center of Excellence for Rare Diseases.RARE GIVING
Rare Giving is a program of the EveryLife Foundation for Rare Diseases to support individual rare disease patients as well as organizations that engage patients, caregivers and others in the community in advocacy and public policy. We believe it is critical for policymakers and regulators to hear directly from rare disease patients andcaregivers.
STAT ACT FOR RARE DISEASE DEVELOPMENT The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of RARE DISEASE CONGRESSIONAL CAUCUS A congressional caucus is a group of members of the United States Congress that meets to pursue common legislative objectives. Formally, caucuses are formed as congressional member organizations (CMOs) through the United States House of Representatives and governed under the rules of that chamber. There are hundreds of Caucuses. ABOUT US | EVERYLIFE FOUNDATION FOR RARE DISEASES About Us. The EveryLife Foundation for Rare Diseases is a 501 (c) (3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.COVID-19 ARCHIVES
Home; About; News; Policy. Burden Study; Diagnostic Opportunities. Newborn Screening Saves Lives Reauthorization Act; Newborn Screening Policy – Federal and StateEVENTS SCHEDULE
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development ofRARE GIVING
Rare Giving is a program of the EveryLife Foundation for Rare Diseases to support individual rare disease patients as well as organizations that engage patients, caregivers and others in the community in advocacy and public policy. We believe it is critical for policymakers and regulators to hear directly from rare disease patients andcaregivers.
COVID-19 ARCHIVES
April 2, 2020. We know that this is an especially difficult period for our community and we want to assure you that our EveryLife team is here. Over the last few weeks, many policy efforts have transpired and we are gratified by the strong spirit of collaboration that has existed within our rare disease community – and are particularly grateful to the many organizations who have joined with BURDEN OF RARE DISEASE STUDY The study is the first of its kind, providing the most comprehensive assessment of the total economic burden of rare diseases (RDs) in a single year.The results help to ensure that the experience of the rare disease community is reflected accurately in policy discussions. NEWBORN SCREENING FOR RARE DISEASES AND RARE GENETIC ONDITIONS The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of EVERYLIFE SUBMITS COMMENTS TO CMS ON RULE IMPACTING ACCESS EveryLife Foundation submitted comments reflecting discussions of the Community Congress COVID Response working group on the Policy and Regulatory Revisions in Response to the COVID-19 Public Health Emergency, Interim Final Rule with Comment Period (IFC). The comments focus on the actions being taken to ensure patients continue to have the option for access to in-home EVERYLIFE SENDS URGENT PATIENT COMMUNITY-LED LETTER TO HHS Today, the EveryLife Foundation joined with nearly 60 patient organizations to send an urgent letter to the Department of Health and Human Services (HHS). As HHS and other agencies across the federal government prepare the country for the next stage—including an eventual national reopening—the letter urges HHS to continue to keepthe unique needs of
NEWBORN SCREENING FOR RARE DISEASES RESOURCES AND The Community Congress Newborn Screening Working Group is dedicated to expanding newborn screening for rare diseases through state legislation. In 2016, the Working Group assisted the Foundation in advocating for California Senate Bill 1095, requiring state alignment with the federal RUSP. * Toggle High Contrast* Toggle Font size
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WE ARE DEDICATED TO ADVANCING THE DEVELOPMENT OF TREATMENT AND DIAGNOSTIC OPPORTUNITIES FOR RARE DISEASE PATIENTS THROUGH SCIENCE-DRIVEN PUBLIC POLICY. We do not speak for patients. We provide the training, education, resources and opportunities to make their voices heard. By activating the patient advocate, we can change public policy and save lives.*
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THE NEED
7,000 RARE DISEASES
affecting 1 in 10 Americans93% OF DISEASES
have no FDA approved treatments50% OF RARE DISEASE
patients are childrenTAKE ACTION
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IMPORTANT UPDATES ON COVID-19 POLICY ACTIVITIES & POLICY CHANGES YIELDING FROM STRONG COMMUNITY OUTREACH EFFORTSApril 2, 2020
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March 30, 2020
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https://everylifefoundation.org/wp-content/uploads/2020/03/Infusion-scaled.jpg 1707 2560 Brenda Colmenares https://everylifefoundation.org/wp-content/uploads/2019/05/ELF-10YrAnniv-Logo-RGB-100.png Brenda Colmenares2020-03-30 19:03:332020-03-30 19:05:08EveryLife Joins with Partner Patient Coalition Organizations to Send Urgent Alert on COVID-19 Impact on Patients Requiring Infused Medications NEARLY 200 PATIENT ORGANIZATIONS SUPPORT SIGN-ON LETTER HIGHLIGHTING ACCESS BARRIERS CREATED BY COVID-19March 25, 2020
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https://everylifefoundation.org/wp-content/uploads/2020/03/Virus-square-image-no-text.jpg 972 1280 Britta Vanderlinden https://everylifefoundation.org/wp-content/uploads/2019/05/ELF-10YrAnniv-Logo-RGB-100.png Britta Vanderlinden2020-03-25 10:39:022020-03-27 14:15:40Nearly 200 Patient Organizations Support Sign-On Letter Highlighting Access Barriers Created by COVID-19 EVERYLIFE FOUNDATION ISSUES SIGN-ON LETTER HIGHLIGHTING ACCESS BARRIERS DURING COVID-19 CRISISMarch 19, 2020
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900 PATIENTS AND FAMILIES ATTEND RARE DISEASE WEEK ON CAPITOL HILL2020
March 11, 2020
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https://everylifefoundation.org/wp-content/uploads/2020/03/Group-Photo-2020_Reagan-Center_withsigns_resized.jpg 1132 1765 Britta Vanderlinden https://everylifefoundation.org/wp-content/uploads/2019/05/ELF-10YrAnniv-Logo-RGB-100.png Britta Vanderlinden2020-03-11 08:59:522020-03-11 08:59:52900 Patients and Families Attend Rare Disease Week on Capitol Hill 2020 RARE ON THE ROAD RALEIGH AND BURLINGAME POSTPONEDMarch 11, 2020
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March 5, 2020
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GEORGIA INTRODUCES LIFE-SAVING NEWBORN SCREENING LEGISLATIONFebruary 27, 2020
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ABOUT US
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit dedicated to advancing the development of treatment and diagnostic opportunities for rare disease patients through science-driven public policy. We do not speak for patients. We provide the training, education, resources and opportunities to make their voices heard. By activating the patient advocate, we can change public policy and savelives.
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