Amyloidosis Research Consortium Inc

A friend of mine was recently diagnosed with AL amyloidosis. As we all do, I immediately started googling to find answers to questions that are, to put it bluntly, unanswerable. Not only was I completely overwhelmed with the amount of information that a google search provided, but I discovered a plethora of contradictory information that left me with more questions than I had when I started. I stumbled across the YouTube videos that ARC has produced and found the first concise delivery of ALA information that was digestible by a non-medical layperson (me). I called ARC's number, left a VM, and received a return call within a day. I spoke with Lori for about 30 minutes and she was willing to answer all of my questions to the best of her ability, point me in the direction of valuable information regarding the disease and treatment, and make recommendations on the best treatment centers in the country. Although it was one short interaction, I am very impressed with the prompt response time and professionalism of ARC. I would strongly recommend that anyone that encounters Amyloidosis reach out to ARC. Incredible company with incredible employees.

So grateful for the information and support from ARC since my diagnosis in 2014. I had never heard of this disease and the information on the internet was just plain scary. Having ARC gave me a reliable, reputable resource to go too for answers. Hearing Isabelle's story was so inspiring to me and gave me hope when I truly thought I had none. Arc provided me an opportunity to not just be a patient but to also be an advocate to voice our communities need for new treatments and have those treatments delivered much faster at the FDA meeting in 2015. I cannot tell you what that meant to me and the gift of strength and courage that I didn't know I needed to face this fight. I would not be as informed or lifted up without the fabulous work of ARC.
Thank you for being in this fight with us, we honestly could not fight without you.

I came to know about the great work of the Amyloidosis Resource Consortium through a very dear friend whose husband died of this horrible disease. I have witnessed their advocacy for patients and efforts to educate the medical community about the disease and all its different types. The ARC provides a central point where information, resources, and networking opportunities are available to patients, physicians, and pharmaceutical companies. I fully support the work of this organization.

The Amyloidosis Research Consortium is an amazing group of dedicated people working to support patients and families affected by the challenging and life-threatening disease of amyloidosis. I know of them and support them in all that they do to advance knowledge of the disease, both within the medical community and within the community of those affected by amyloidosis. This organization serves and works with every patient who contacts them, other non-profits, pharmaceutical companies working in research and development for treatment options, and all the way to their partnership with the FDA in getting these drugs approved and available. I highly commend the group's work and recommend them for all things related to amyloidosis. I personally have observed the tireless work by one of their patient advocates and admire her dedication to assisting patients, helping with consortium goals and working in the medical industry to make patients lives better. Visit their website at www.arci.org. D. Van Sant

I've worked in the world of Amyloidosis for close to 10 years and have always been impressed by the Amyloidosis Research Consortium. Their integrity and commitment to offer support and resources for Amyloidosis patients, families and healthcare providers has always been outstanding. It is because of ARC that our patients have non-branded high quality educational resources that will improve not only their understanding of their disease process but also enhance their quality of live. ARC has always strived to provide impartial, state-of-the art information for patients with Amyloidosis while supporting scientists and healthcare providers in finding a cure. Thanks for all you do ARC (seen and unseen)!!!

I found ARC after my mom was diagnosed with Cardiac AL Amyloidosis last summer, June 2020. I was terrified of losing my mom to this disease, so I looked for any resources or groups that were helping fund research of this historically understudied disease. Not only was I extremely impressed by the work ARC was doing, but there were plenty of resources and webinars offered as well that were very helpful in having our family become educated on what it means to have a loved one diagnosed with amyloidosis. Donations were lower last year with everything being virtual for ARC, so I decided to host a virtual concert series to raise money for the organization and help continue the important work on researching the disease. I am extremely grateful for the work that this consortium is doing to improve treatment, quality of life, and hopefully one day find a cure. Thank you to ARC and the entire staff of dedicated employees all coming together for a great mission and cause.

At the time of my amyloidosis diagnosis a little more than a year ago, it was overwhelming and terrifying to read about this disease through a google search. The diagnosis felt like a death sentence. My daughter found the Amyloidosis Research Consortium and we were immediately given information that was updated and gave us reason to be hopeful. I have continued to benefit from this wonderful resource. Thank you to Isabel and staff!

The Amyloidosis Research Consortium is an outstanding organization whose focus is on helping patients dealing with amyloidosis. Their website is full of useful information to help patients understand their disease, how to get treatment and what kinds of treatment is available including how to find clinical trials and treatment hospitals and other kinds of support. I love the patient stories. They have a hotline phone number if you want to talk to someone who can answer questions for you. And they have links to all kinds of webinars with amyloidosis experts who teach about the disease and who answer questions from the patients. I have learned a lot about this terrible disease.

The Amyloidosis Research Consortium is working harder than ever in search of solutions for Amyloidosis. They always put patients first and help them connect with appropriate clinical trial opportunities which is commendable. They are always ahead in helping promote positive amyloidosis solutions to patients.

As a patient, the effect of the ARC on my journey with this disease has truly been profound in at least three dimensions. First: This is a complicated disease, and upon diagnosis it seemed like I was wandering in a wilderness of uncertainty and overwhelmed by trying to deal with what was ahead. The ARC, through its apps such as My Amyloidosis Pathfinder, and its resources such as webinars and curated information helped me to find my path. Second: The ARC, true to its name and mission, has made a real and concrete difference in advancing treatment for all types of amyloidosis through working together with patients, pharma, government, and medical professionals to benefit all of us who have this disease. And third: it has provided me a way to give back for the help that I have received. I am very grateful to Isabel and everyone who has given of themselves in this effort.

Amazing resource, great webinars, and many useful tools to help with all aspects of getting treatments, and navigating through an appt with the specialists.

The Amyloidosis Research Consortium organization continues more than ever to driver solutions for amyloidosis. They always have the patient at the forefront along with coordinating research opportunities with multiple organizations/companies. They provide information to regulatory agencies for all involved in promoting positive amyloidosis solutions to extend life.

ARC is an organization which helps keep the amyloidosis patient informed and assists the patient in being their own advocate. The ARC website has helped me with insurance information, and with different types of support. The website has many informative videos and ARC aids in finding the best clinical trials through MAP. And most importantly, ARC is aiding in the development and research of medications for the amyloidosis patient, and helping to improve our quality of life. As an amyloidosis patient I feel blessed to know ARC is doing a very important work on my behalf.

I am what non-profits might call a “super volunteer” and am currently a member of the ARC Board of Directors. I have been “working” in amyloidosis since 2004 after my husband’s diagnosis of amyloidosis, facilitating a support group and working awareness booths at medical conventions. I started volunteering for the Amyloidosis Research Consortium when it was still just an idea and not even incorporated yet. The commitments of ARC’s leader, Isabelle Lousada, and the other volunteers and now employees, have been extraordinary in the rare disease world. This team gets things done! They break down rare disease barriers, enlist and engage critical experts and key opinion leaders, and deliver on projects, publications, and the global awareness of this life-threatening disease.
From the launch of the Industry Advisory Council and the Patient Driven Drug Development meetings with the FDA to the upcoming ARC Masterclass: The Art and Science of Managing Amyloidosis, every task, every project, every accomplishment, has been focused on improving the lives of amyloidosis patients.

I recently spoke with a patient who told me that ARC (Amyloidosis Research Consortium) saved his life. If he had not gone to the ARC website and used the "My Amyloidosis Pathfinder" tool to help him locate an amyloidosis treatment center, he would never have gotten the correct treatment. Organizations like this are crucial for patients with rare diseases that are relatively unknown by the medical community.