Partners

WhereAreTheCures.org offers all patients and their families access to information about the current system for developing new treatments and the ways in which organizations and individuals are reforming the system for faster results.

The following organizations are engaged in activities designed to accelerate the rate of developing new treatments. Visit their web sites for more details about each organization’s strategy.

Organizations who would like to join WhereAreTheCures.org as partners should contact info@wherearethecures.org for more details.

Every dollar raised in support of the ALS Therapy Development Institute (ALS TDI) advances its single mission: to develop medicine that may help people living with ALS (Lou Gehrig’s disease). ALS TDI is an independent, 501c3 non profit biotech that specializes in filling the gap between basic science and clinical development. Purposefully designed to bridge the so-called “Valley of Death” in pharmaceutical development for ALS, the Institute has developed an industrial-scale discovery and development platform that allows for the identification and rigorous testing of dozens of potential therapeutics each year.

“Each disease represented in this short list is different, but the need is the same — develop and deliver medicine for people that currently don’t have any. ASL TDI was literally built by patients and their families that asked this very question, ‘Where are the cures?’ We are proud today to support this new campaign and join other organizations that are committed to the development of treatments for currently unmet medical needs such as Lou Gehrig’s disease.” –Dr. Steven Perrin, CEO and Chief Scientific Officer, ALS TDI

The American Tinnitus Association exists to cure tinnitus through the development of resources that advance tinnitus research.

The Children’s Rare Disease Network will create greater public awareness for rare diseases, while connecting, educating and empowering the millions of families and caregivers affected, through an online community and collaborative portal.

CureTogether helps people manage their own health online. Check your symptoms, compare with people like you, and track your progress toward your goals.

“The wealth and power if information that patients have about their own health is a vast, untapped resource in traditional research. People coming together in massive ways, like through the Patient’s Manifesto, is a key part of the future.” –Alexandra Carmichael, Co-Founder, CureTogether

The Patrick and Catherine Weldon Donaghue Medical Research Foundation provides grants for medical research of practical benefit. It focuses on initiatives to strengthen research on health issues, to promote research leadership, and to put new knowledge to work for public benefit.

Hide and Seek Foundation is a community of people dedicated to finding treatments and cures for a devastating genetic condition called Lysosomal Disease.

“Educating America about the gap that exists between the amount of medical research funded in the U.S. and the drugs actually developed to treat and cure those suffering from disease is the first step in repairing the broken system. Giving America the opportunity to voice our opinion by signing the Patient’s Manifesto is a giant next step. Kudos to the Myelin Repair Foundation for launching the Where Are The Cures initiative.” Stephanie Lyn Carlough, Cofounder, Hide & Seek Foundation for Lysosomal Disease Research

The Gateway for Cancer Research funds innovative research studies that help cancer patients worldwide. Providing a Gateway to a new treatment option for today’s cancer patients by transforming cancer research. We’re demanding results, encouraging researchers to work together, and being open about everything we do. We’re giving millions of patients reason to believe in the future.

The Kakkis EveryLife Foundation is dedicated to improving the treatment of patients with very rare diseases through education and changes in the process regulating the development of therapies. Our CureTheProcess Campaign strives to inspire science-driven public policy that will increase the predictability of the regulatory process.

“With so much science available that could be translated to new treatments, we need to make changes that will allow these treatments to come forward as soon as possible. I won’t slow down — as the people that matter most to me, patients and their parents, cannot slow down their disease to wait for us.” — Emil D. Kakkis, M.D., Ph.D. President, Kakkis EveryLife Foundation

The MPD Foundation funds innovative accountable research that produces results for patients with Polycythemia vera, essential thrombocythemia and myelofibrosis.

“Promising molecular compounds are moving through the drug development pipeline, but a shortage of funds, and lengthy gestation period, compromise the ability of patients to benefit from these potential treatments.” −Robert Rosen, President, MPD Foundation

PatientsLikeMe is the leading online health community for patients with life-changing conditions. PatientsLikeMe creates new knowledge by charting the real-world course of disease through the shared experiences of patients.  While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world. PatientsLikeMe endeavors to create the largest repository of real-world disease information to help accelerate the discovery of new, more effective treatments.

“The message of WhereAreTheCures.org succinctly captures the learned frustration of all of us who have gone through the process of realizing how dysfunctional the current research system is at helping those we love. We need to work together to build a new 21st century discovery processes and systems that align patients, researchers and industry to rapidly deliver meaningful treatments.” – James Heywood, Chairman, PatientsLikeMe 

VascularCures is the leading on-profit organization funding research into the cause, prevention and treatment of vascular diseases.

“It takes too long and too many dollars to translate research into cures — there must be a better way!” — Wendy Hitchcock, Executive Director, VascularCures