Find Specifically Named Diseases Research Nonprofits and Charities

  Anabel wrote:

I have been a CFRI Volunteer, client served , professional in CF, for over 10 years. CFRI has been a gem in my life and is truly one of the reasons I am still alive with CF. It has provided me a home away from home, with wonderfully supportive staff,... more »

  Karen110 wrote:

My child was diagnosed with this rare condition at age two. We were told there is little to no information about AHC and no cure. We were told our best bet was to contact this family organization, which we did. They helped us on our long and ever-changing,... more »

  Sasa Zorovic wrote:

FRAXA is the hope for all those affected with Fragile X and their families. The organization is singularly focused on funding research to cure Fragile X. It is very efficient in terms of using donor funds in putting it towards research--a cut above most... more »

  tina5 wrote:

As the president of the APS Foundation of America, Inc, I would like to share the accomplishments of 2009. Every year we work harder to get awareness out and work on education to the public and medical community. - Maintained 501(c)3 Non Profit Status... more »

  Kathy P. wrote:

For many years I did not know what was wrong with me--why I had such strange feelings in my legs and couldn't sleep. When I finally found out it was Restless Legs Syndrome, I started researching it on the internet. (My doctor certainly knew little about... more »

  davidmadausjr wrote:

Does not spend enough on ttts families and research. Took in $90k and spent $3k on families while $50k was paid out in salary. more »

  hmiller07 wrote:

Their loaner closet has helped my mom (who has MSA) immensely. This charity is an amazing resource especially in a world so unfamiliar with such a devastating disease. more »

  mameskis wrote:

The Dravet Syndrome Foundation was formed by parents who wanted to see aggressive research being done in the field of Dravet syndrome that would impact their loved ones and other afflicted with this disease. Although science might not move as quickly... more »

  KristenSE wrote:

My daughter has 18p-. This is a rare genetic condition that manifests itself with speech delay, social delay, low muscle tone, cognitive delay, short stature among many other issues. My husband and I found out this devestating news in 1999. We were... more »

  Nonprofitgirl wrote:

Every dollar SLC6A1 Connect raises goes toward research. more »

  Momto4 wrote:

The Mission of the foundation is very much needed in our small community of parents of kids with Williams Syndrome. They seem to understand what the needs are. more »

  txbasketballmom wrote:

After all three of my children were diagnosed with Ehlers-Danlos syndrome I turned to the foundation for information and support. Ehlers-Danlos National Foundation is THE source for all information relating to this inherited disorder of the connective... more »

  twiggy wrote:

SADS is an amazing organization!!! etc etc etc etc etc etc etc etc etc etc etc etc etc etc etc more »

  Lisa Hayden wrote:

As an employee of the IRSF, I am eager to share that we have a lot of big initiatives underway right now and I am excited to see what we uncover next! Our foundation is only as great as our supporters and our supporters are amazing. We value what they... more »

  AskManny wrote:

Having visited DRI in Miami once, I was very impressed with the way the institute is set up with the goal of finding a cure as its core, resulting in the tearing of inter-departmental barriers to facilitate collaboration internally. Also, it was impressive... more »

  Pat - NJCFSA wrote:

The New Jersey Chronic Fatigue Syndrome Association, Inc. (NJCFSA) is an all volunteer organization devoted to ME/CFS. It provides information to families, friends, physicians, school districts and others involved with ME/CFS patients. It conducts annual... more »

  SarahBrownell wrote:

This is a life changing experience. Erase PTSD Now, helped my husband "reset" his brain to pre PTSD days by supporting his Stella (SGB) procedure. His anxiety is lower, his patience higher, his life better making our lives better. Thank you. more »

  jaime4 wrote:

I have been raising money for the Alliance for Lupus Research since 2006. I started working as a volunteer in 2007 ans organized the San Luis Obispo County Walk With Us to Cure Lupus. We are now planning our 4th annual walk! Alliance for Lupus Research... more »

  ahedison wrote:

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... more »

  proofreaderusa wrote:

I've been unemployed for 12 mos., the longest period of time w/o a job in my life. I was so grateful to find a volunteer opportunity at DFI. I was so impressed by the friendly, professional demeanor of the staff and the Executive Director is so approachable... more »

  CWellsSPSRF wrote:

I've worked for more than 20 years in the nonprofit sector and can say with confidence that it has been an absolute pleasure being involved with such a driven organization! Their mission is clear and the work that supports their mission is intentional... more »

  Talitha McGuinness wrote:

Fetal Hope is unique that it is one of the only organizations to serve as a liaison between both families affected by fetal syndromes such as Twin-to-Twin Transfusion Syndrome and other fatal syndromes, and the medical teams that provide their care. The... more »

  Lora Godfrey wrote:

The amount of forward movement in management and potential cures have offered a very difficult disease and piece of hope. My daughter has CF and she is doing fantastic. When she wasn't we were able to turn it around from the treatments that the research... more »

  Lindsey S.4 wrote:

Cure Sanfilippo Foundation works tirelessly to advocate for all patients diagnosed with Sanfilippo Syndrome. more »

  eosfighter wrote:

While this organization does a good job raising money, it lacks a professional review process for their donations that anyone is aware of. Their website is very lacking. It does not have very much information and is hard to navigate. Their head volunteers... more »

  Tina M. wrote:

I developed the symptoms of Dystonia 3 yrs ago this August. This disease is rare (probablly not as rare as they think); so all of the numerous doctors I went to shuffled me from here to there. I went through every kind of medical test. My original... more »

  Leah L. wrote:

The Hepatitis B Foundation is the only national nonprofit organization solely dedicated to finding a cure for hepatitis B and improving the quality of life for those affected worldwide through research, education and patient advocacy. It is headquartered... more »

  Jeff.Denneen wrote:

Saving Case & Friends is an amazing group. When our son was first diagnosed with Hunter Syndrome we relied on the people at Saving Case & Friends for critical advice about treatment options, specialty care, and doctors versed in this disease. We also... more »

  MichaelEAConn84 wrote:

Since learning about the Usher Syndrome Society, I've been impressed how they've gone from strength to strength with their mission and impact. Usher syndrome is a rare genetic disease which is the leading cause of combined deaf-blindness, and nearly no... more »

  gregbenton wrote:

Great family non-profit organization aimed at funding research for myelin repair. more »

  walkmo1 wrote:

When my son was diagnosed with CDKL5, I felt like I was handed a life-raft after being lost at sea. I had been drowning in the epilepsy unknowns and other delays my son had. The IFCR gave me knowledge and information, but even more importantly they gave... more »

  Steve Benesh wrote:

I have a hard time wanting to donate to an non-profit organization where the 2 top workers make almost $1M. With 2 friends fighting Parkinsons, I think I'll donate elsewhere where the top workers work for much much less. I wonder why they call it a... more »

  robindepaul wrote:

I was shocked when my doctor suggested a hysterectomy. I was just diagnosed with uterine fibroids and came to him about the symptoms they were causing. I didn't even know what fibroids were! This was early 2000 and I was 42 years old with one daughter.... more »

  AlzheimerCaring wrote:

I wanted to volunteer and they basically slammed the door in my face. I was trying to help, since my grandmother has Alzheimer's, and they were very rude and inappropriate, showed a total lack of empathy. I would not associate myself with this organization.... more »

  Marie-Eve wrote:

I love the Castleman Disease Collaborative Network (CDCN).First of all, the co-founder, David C. Fajgenbaum, has ICMD. Then he really understand the issues, the gravity of the situation. This doctor and his team are intrinsically and dedicatedly... more »

  Michelle403 wrote:

I stumbled upon this site back in 2012, while desperately searching for answers for my pain. I read the description of symptoms and literally cried out loud because the words I read were exactly what I felt. I printed those pages out and took them to... more »

  Rebecca H.6 wrote:

Cystinosis Research Foundation is an amazing group of leaders and volunteers who have made great strides helping those individuals and families impacted by cystinosis. They conduct a family conference every year to educate families on research breakthroughs... more »

  curenf wrote:

When our family first learned that our daughter (who was 4 months old at the time) had NF, we were overwhelmed. The internet had precious little accurate information about NF that was not sensationalized and we were emotionally drained after seeing what... more »

  Debusman wrote:

The Center trains tutors and provides tutoring to students. The tutors are supervised by highly qualified instructors. My daughter attends the Center and is gaining the skills she needs to read. The Center provides her with excellent tutoring services... more »

  nedmomof1 wrote:

Through other parents and special-need advocates, I was introduced to the Danielle Demarzo Foundation Inc. I remember getting my first email invinting me to a Disney Show and hardly believeing that it was going to happen. Well, I replied that my son,... more »

  MWood wrote:

I used to work there. Poorly organized. The President up and left and moved headquarters to Florida without telling employees or even the upper-level staff. I left in 2009 because it was clear the focus was on Florida and not San Diego anymore. Sad,... more »

  CFT2022 wrote:

The SRF is a well-run, efficient, and effective nonprofit organization to which I am proud to donate. I am confident my donations are getting us closer to a cure for scleroderma, because the SRF is the country's leading organization driving the science.... more »

  NicoleRussell wrote:

My family has been affected by Propionic Acidemia since 2010. We have two small children born with this life-threatening illness and every day since we received that call each has been filled with fear, worry, doubt, and grief. I immediately researched... more »

  Jason37 wrote:

Phelan McDermid Syndrome (aka 22Q13) is a genetic disorder encompassing the deletion of a string of genes on the 22nd chromosome which includes the SHANK3 Gene. SHANK3 deletions and mutations have recently been identified as a cause for AUTISM. Although... more »

  mommsue1 wrote:

I was diagnosed with SMAS while the non-profit was still being born. The non-profit has helped so many warriors in the last 7 years (can’t remember the exact date the non-profit became to be) with grants and even with building files of Drs and surgeons... more »

  M Ey wrote:

When diagnosed with Cicatricial alopeia the carfintl.org website provided much needed information. When a CARF volunteer phoned me I no longer felt alone. I attend free support group meetings where patients, their loved ones and a doctor discuss all aspects... more »

  Judy79 wrote:

I have been involved with this organization since its inception in 1984. It has served thousands of individuals on a sliding scale or free basis. more »

  patriciarmcmillen wrote:

This organization funds ground-breaking scientific research into environmental causes of cancer - following through on Rachel Carson's work published in Silent Spring. That's all they do - and who knows, maybe they'll help people prevent getting cancer... more »

  joshuarichard80 wrote:

This organization has been a wealth of information for my family and our dealings with Alport Syndrome. They also provided my daughter with Paul Silver Tribute grant towards her continued education more »

  GWendt3 wrote:

ALSTDI has profoundly impacted my life and the lives of several friends who are also patients. I first visited ALSTDI on the one-year anniversary of my dad's passing from ALS. Until then, I thought supporting ALS meant participating in the annual ALS... more »

  AnotherDonor wrote:

This organization is for all intents and purposes defunct. Despite the good heart and well-intended initiative by founder, Vix Kennedy, this organization never really got off the ground. It has literally done Nothing for years. The board is a motley crew... more »

  mzraik wrote:

As an almost full-time volunteer for the National Reye's Syndrome Foundation, I get to see the day-to-day impact their awareness and education programs provide, not only for the community, but for the USA and even on a global basis. The National Reye's... more »

  John Kozyak wrote:

I was introduced to the previous CEO of the Natioanl Parkinson Foundation shortly after my Mother was diagnosed with PD. He helped my Mother identify the leading doctors in the St. Louis area and directed me to the NPF website for easy to understand,... more »

  Sohrob T. wrote:

This is the only organization that I know of which is solely devoted to research leading to treatments and/or a cure for this very rare disease. In the span of only 10 years they've discovered the gene responsible for this tragic disease which takes the... more »

  thinktwice51 wrote:

As a volunteer and Board Member for Pat's Fund, our goal is to raise money through educational events, wine auctions and general awareness to fund research. It is such an important opportunity to help fund research to solve the autoimmunity puzzle as... more »

  AuntieKitKat wrote:

I attended a panel of the scientists that do the research and trials for cancer gene therapy, which ACGT helps fund, and I am a vendor of this organization - they are my client. All of the company and its volunteers attended the recent panel event and... more »

  Tiffany Sparks-Keeney wrote:

This organization states that they "have an obligation to our donors and the public to transparently report our activities. We embrace this ethic and provide our most recent audits and IRS Form 990s," yet the most recent IRS 990 is from 2008-2009. On... more »

  losorioles wrote:

This is a wonderful nonprofit dedicated to finding a cure for diabetes using cutting edge research that bigger groups overlook. I support this charity because I have two brothers with diabetes and I hope one day that they will be cured. Diabetes Action... more »

Fund research and care for mesothelioma more »

To translate basic science observations into therapeutics in specific research themes. more »

Diabetes national research group (dnrg)supports fundamental research more »

Our mission is to eradicate stroke as a threat to women's health through research, public education, and by empowering women and... more »

To find a cure for amyotrophic lateral sclerosis (als) through funding research. more »

The organization promotes the exchange of ideas, procedures and techniques related to endocrine surgery worldwide through meetings,... more »

The organization supports and encourages clinical investigations and medical research conducted throughout the world for treatment... more »

To provide long-term support to 1) basic and clinical research programs leading to a cure, 2) clinical centers of excellence for... more »

The purpose of team muscle makers is to organize and operate charity teams and events to raise money for mda advanced reasearch.... more »

Diabetes National Institute is first and foremost a growing campaign against diabetes and a community effort to enrich the lives... more »

Provide forums and workshops where parents, educators, indiviudals with dyslexia, and researchers, share their knowledge about... more »

The mission of the frontotemporal lobar degeneration association is to promote research, education and awareness of ftld and related... more »

Families dealing with learning issues need help understanding the basic legal, educational and medical aspects of learning difficulties... more »

The carol ann foundation and the internation morquio organization is a 501 (c) 3 non-profit organization dedciated to seeking... more »

Our mission at Shower Our Spirit is to fund medical causes that affect women and children worldwide. Focused causes are those... more »

The Greater Florida Chapter is the largest Florida chapter under the Lupus Foundation of America, Inc., serving 47 counties. This... more »

Offer support and programs geared to families affected by tay-sachs disease and over 40 other fatal degenerative genetic disorders... more »

Diabetes education and public outreach more »

The DTF was founded in 1964 by Dr. Buris R. Boshell. The goals were to provide education programs to teach patients with diabetes... more »

The primary purpose of the organization is the funding of research to find a cure for diabetes. more »

To provide medical research funding for medical research and associated activities by organizations that qualify as exempt organizations... more »

The purpose of genetic research institute of the desert is to conduct genetic research regarding multiple sclerosis and cancer... more »

TO PROMOTE AWARENESS OF SANFILIPPO SYNDROME WHILE RAISING FUNDS TO SUPPORT MEDICAL RESEARCH TOWARD A CURE. more »

To develop and successfully accrue patients to cancer clinical trials in west virginia. more »

To promote diabetes research and help to provide funding for the cost of the wing at hackensack university hospital used to educate... more »

To bring encouragement to the world of multiple sclerosis and beyond through research, triathlons and community. more »

Straightforward foundation's mission is to improve the quality of life of individuals affected by scoliosis through empowerment,... more »

To provide long term diabetes mellitus research. more »

TO HELP FIND THE CURE FOR DIABETES, AND UNTIL THAT GOAL IS ACHIEVED, TO PROVIDE THE CARE AND SELF-MANAGEMENT SKILLS NEEDED TO... more »

To raise awareness and prevention of lyme disease. more »

To carry on and support scientific research, health systems development, strengthening and implementation, health science education... more »

The association of osteobiology is a not-for-profit organization for scientific and educational purposes for scientists committed... more »

Hope For A Cure Foundation for Parkinson's Research was established to increase awareness and raise funds for Parkinson?s disease.... more »

Our mission is to find a cure and new treatment options for Familial Dysautonomia by funding relevant research programs, to provide... more »

Fundraising and providing financial support for an organization researching a cure for galactosemia. more »

The organization's mission is to help the public understand the dangers of high blood calcium, parathyroid tumors, hyperparathyroidism,... more »

Spinal cord injury assistance and educational awareness more »

To assist in the expansion of awareness and research efforst to further improve the lives of those born with krabbe disease. more »

To increase global awareness of spinal muscular atrophy (sma), the #1 genetic killer of young children, accelerate research focused... more »

Develop vaccines, diagnostics and novel drugs to prevent, detect and treat infectious diseases of poverty. more »

To financially aid in the research and development of therapies for late infantile batten disease. more »

THE MISSON OF THE SOCIETY IS TO END THE DEVASTATING EFFECTS OF MS more »

Helping individuals with dyslexia more »

Worldwide education of medical professionals and families, cystinosis research funding, and family support. more »

The Diabetes Institutes Foundation began in 1988 as the supporting arm of the Strelitz Diabetes Institutes at Eastern Virginia... more »

To lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures,... more »

Childhood obesity care and education more »