The Covid-19 Longhauler Advocacy Project's mission is to advance the understanding of Long COVID and expedite solutions and assistance for Longhaulers through advocacy, education research & support.
A movement requires collaboration amongst and experiences from within the community to be successful. We advocate for Longhaulers by continuously assessing the needs and experiences of the community, identifying urgent trends and bringing this information to those who can assist us.
Doing this is not always easy or quick. Advocacy takes passionate, driven people with a deep understanding of the community as a whole, and we are proud to have a team of patient-advocates and allies who share our common goals forging a path forward for Millions of Longhaulers.
We are firm believers that the patient is their own best advocate. We take pride in providing our members with accurate, up to date information about Long COVID and its associated conditions such as POTS, ME/CFS, MCAS, SFN, FM, AI Disease, Chronic Migraine, IBS and more.
We work collaboratively with other chronic illness communities to not only learn ourselves, but also educate our members, many of whom have developed multiple associated conditions. We speak up against misinformation and share information that may be hard to hear for some, but necessary to know. We believe knowledge is power and we will always encourage our members to become familiar with the resources available for Long COVID and its associated conditions.
We also provide educational resources to providers and researchers and we encourage our members to bring our resources to give to their providers as well.
Patients have been the ones educating medical providers and researchers from the very beginning. We fought so hard to be heard, and in order to do that, we mobilized one of the quickest movements formed, collected our own data via multiple patient-led studies and surveys and went to the media, non stop until we started to get attention.
Long COVID patient research still continues to lead the way, and we continuously identify trends within the community about 6 months before the research world does. It is imperative to highlight and elevate patient-led research to expedite main stream research and connect patients to researchers to identify and attempt to plan and find solutions for the Long COVID community.
Longhaulers found one another on the internet almost immediately. Support groups have often been the only safe place for Longhaulers dealing with friends, family and medical providers who often do not believe them. Simultaneously, groups like ours have been the biggest source of information for Longhaulers providing much more information and many more resources than they often receive from their doctors.
We offer a safe place where members can discuss the good and the bad, ask one another questions, look for specialists in their areas, locate post covid or research centers and more. Without Long COVID groups, our movement would not be so large or where it is now. However, there is still a very long way to go, and we will continue to be here for one another throughout this journey.