Find Specifically Named Diseases Nonprofits and Charities

  Patty wrote:

I would commend 'A Walk to Beautiful' to anyone interested in donating to this organization. You will see that the Fistula Foundation and the women it serves are very worthy of your interest and your contribution. more »

  kemoll5 wrote:

Our healthcare system is broken, yet people still get sick and millions upon millions of people need help when they do. From the neediest of the neediest to even the upper middle class can sometimes not afford to get sick, yet they do, often enough at... more »

  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 »

  maureen5 wrote:

I was diagnosed with Fuchs' Endothelial Corneal Dystrophy many years ago. At the time I was told it was something that may or may not ever affect me. I downplayed the situation and lived my life as usual. During the summer of 2008 my vision seemed to... more »

  AccessiaHealth wrote:

PSI provides a kind, caring, and generous work environment which enables staff to provide for the thousands of chronically ill patients we financially assist. I consider the PSI staff as a second family and know each and every employee by name. In our... 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 »

  cilla wrote:

I have many friends who have been touched by lupus, and want to do all I can to help. The Lupus Foundation has brought awareness to my community by humbly but confidently asking for specific support through donations, education, and many other services. more »

  dmgodfrey1 wrote:

I have been involved with Buddy Cruise since their inaugural voyage in October 2008, as their photographer. Buddy Cruise provides quality education and fun activities on a cruise. Workshop topics include education (including IEPs and working with public... 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 »

  lbigknife wrote:

I have a number of auto-immune diseases including Fibromyalgia, Sjogren's Syndrome, Rhumetoid Arthritis, Psueod Gout and Interstitial Cystitis. I live in Oklahoma City and there is very little support here for patients with chronic pain issues. Unfortunately... more »

  kozenber wrote:

As a parent with a child with ADHD, you are constantly on the look out for resources and information. Less than a week before the annual seminar, I found ADDA-SR. I was able to receive a parent scholarship to attend. Just being with other parents--hearing... more »

  Sarah M. wrote:

The Michigan Lyme Disease Association is an excellent organization and was a great resource for my family when my brother became ill. After a year with no diagnosis, it was my mom, not doctors that discovered it was Lyme disease. When my parents couldn't... more »

  JimKearns wrote:

My son has attended the Gow School since 8th grade; he is now a senior. The experience has been remarkable. He has learned to deal with his dyslexia, and more importantly he has matured as an adult. I could not be happier with the entire experience more »

  hoboken wrote:

Bottom line....all funds raised stay right here to help those in need, be it screening or medecine needs. more »

  Boris Yakubchik wrote:

I suspected that with my minuscule donations I couldn't do much good in the world, but it turned out that even with less than $5 I could protect two people from malaria for about 5 years if I gave it to AMF! Against Malaria Foundation (AMF)... more »

  david32 wrote:

The Diabetes Hands Foundation is masterful at engaging people with diabetes to educate and spread awareness. Through TuDiabetes.com, they have built a cohesive and inspirational social network for people with diabetes. It is truly first in its class. more »

  sbrad2004 wrote:

In a time when our culture is so knowledgeable about medicine, it is tragic that we are losing mothers and/or babies during childbirth. Before our own next door neighbor experienced her AFE, we had never heard of this, had never known anyone else who... more »

  Carlos Z. wrote:

I have been in a sense with the children's burn foundation since i got burn at 7yrs old.my years as a camper at camp gung ho were great.it was something i'd always look forward to.at age 14 i was a pioneer with the young adult burn survivors and suppoerters... more »

  CAPkids wrote:

Bald Girls Do Lunch is a great resource for women with alopecia. The Children's Alopecia Project is proud to partner with them as they help to restore self-esteem in women living with hair loss. more »

  R.C. wrote:

AnCan is a tremendous resource offering real-world experience and actionable data. The caring folks associated with this foundation are selfless in the way they interact with those who seek their help. In my case, AnCan was largely instrumental in my... more »

  David Wolfesky wrote:

rarediseases.org is far removed from knowing the patients they serve. more »

  Justin Reilly wrote:

ME/CFIDS is a devastating neuro-immune disease. ME is a disease that desperately needs funding more than almost any other. Unfortunately CAA, one of the two largest ME orgs in the US, has failed patients and thus is not the org to which one should... more »

  zebrarule76 wrote:

In July 2011 I was diagnosed with Pulmonary Arteral Hypertension. PHA was a god send to me. Gave very helpful infomation and encoraged me when I was scared. Belong to support group also give me the opportunity to meet other patients first hand. Every... more »

  Shelby14 wrote:

PCOS Challenge is such an amazing organization making such a difference in the PCOS community. With PCOS being so greatly underfunded and misunderstood, it was so comforting finding such a vast resource of knowledge and and sense of community with fellow... more »

  Kris29 wrote:

I have lived, secretly, with pmdd for decades. Decades of monthly physical and emotional pain the week before my menses. I thought I was unique in my suffering. Any time I tried to explain I was cut off. No one wanted to listen to anything associated... more »

  coreyrocks1994 wrote:

The NN is a fabulous organization that provides tremendous support to those afflicted by narcolepsy. We just returned from our annual conference. It was well organized, had very imformative speakers, provided a wealth of knowledge to those attending and... more »

  JillMD71 wrote:

I cannot say enough positive words to describe CAF. They are a nonprofit that cares so very deeply and are always a pleasure to work with in any capacity. more »

  Joanna M. wrote:

The mission of The Pink Fund is to provide short-term financial aid to women and men (and therefore their families) who are in active treatment for and recovery from breast cancer. A cancer diagnosis can bring a myriad of practical issues, including... more »

  Ali_Z wrote:

I'm a Social Worker. I have been to events that have supported nonprofits that offer services ranging from suicide prevention, domestic violence, SAFE/SANE, Cancer, Alzheimer's Disease all the way to small local charities based within a few city blocks... more »

  bob-chrisman wrote:

One of the strongest lessons from All Kinds of Minds is to focus of strengths. In my career as a teacher, weaknesses often become the target of extra effort. Effort is much more effective when the focus is on what the student CAN do and understand. ... more »

  PINCC Administrator wrote:

I've been taking teams of volunteer doctors, nurses, and lay people to 8 countries in Central America and Africa for 3 years, to train and equip medical people who serve poor and high risk women in methods to prevent cervical cancer. It's the #1 cause... more »

  tonimartinez61 wrote:

As the former VP of Clinical Operations for a small biotech, I was introduced to the NUCDF in affiliation with my company's UCD research program. Cindy LeMons, as well as several members of the UCD Consortium provided critical input and expert advice... more »

  richardson62617 wrote:

I am very thankful for ticked off and there help with treating Lyme. Many of us couldn’t do it without there help. Please help them in any way you can do they can continue to help others. So very thankful for them more »

  sophiecaroline wrote:

Infinite Strenght is an organization born out of love, commitment & support for women battling metastatic breast cancer. It is an organization I am proud to support. more »

  KeciaN wrote:

As a CF center social worker, I have referred multiple patients to Claire's Place and have had success in obtaining crucial resources to families in need. The process to apply for grant funding is simple and fast ! Thank you for all you do more »

  Childrens Alopecia Project wrote:

I am the founder, so I am bias. Please visit www.childrensalopeciaproject.org and see if you think we try to help build self-esteem, provide support and raise awareness. Thank you and take care. Founder, Jeff Woytovich Children's Alopecia Project, Inc. more »

  Keri4 wrote:

Mitoaction has played a huge role in supporting my family and I as we've struggled through the diagnosis of five of my family members. The information on their website as well as their phone conferences and phone support has helped me put many pieces... more »

  Jane Baker wrote:

I am an RN and a "Patient Navigator" at a Cancer Center in Carrollton, GA. Through our Cancer Center, Cancer Fund of America (CFOA) has provided numerous cancer patients with personal products, household products, liquid nourishment products, blankets,... 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 »

  kschoen wrote:

The Foundation is VERY committed to its goal of raising awareness of LGS, providing support for LGS families, and raising funds for additional research. As a board member, and participant in the many LGS foundation events, I have first-hand experience... more »

  lostberrypicker wrote:

I helped in the planning stages of forming this organization. Was at first ever meeting. Met others who are dealing with this horrible illness and continue to talk with families on how things have worked/not worked for us as a family living with someone... 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 »

  DJones55 wrote:

They Rock! They have given Millions of Dollars in research money to finding a cure and enhancing the lives of Individuals with AS. Whenever I have a problem I can call them and find support. I've been participating in their walks and they are a blast,... more »

  Kenna J. wrote:

My daughter Carlie was born Sept 10, 2010. I remeber my husband and I telling the family about this cute Port-Wine birth mark she had on the right side of her face. A following day the doctor's told us that Carlie migt have some medical issues becuase... more »

  Michael wrote:

Having known members of the staff affiliated with LTBH for many years, and their dedication to find the means to eliminate infectious HIV reservoirs, which persist despite all current treatment approaches, I am writing to give my personal endorsement... more »

  donnaeh4 wrote:

This organization is very helpful to the families with children struggling with dyslexia. They always have information when contacted. They have a list of providers in your area. They have amazing trainings for teachers and parents to educate themselves... more »

  tritter wrote:

My husband of 35 years of age had his 3rd stroke in May of 2012. He was sent to Barnes Jewish Hospital in St. Louis, MO. It was there where he was finally diagnosed with Fabry. The doctor being a stroke specialist did not know much about this disease... more »

  libby6988 wrote:

What an amazing foundation!! As a parent of a child with a rare Auto Inflamitory Disease, StopCAIDNow has given our family unmatched support and real hope that a cure someday will be found! We had been told for so long that we were alone and that research... more »

  amycaroline wrote:

I have been volunteering for Project Angel Heart in different capacities for the past 12 years - that in itself speaks volumes, as I am a commitment-phobe and have never done anything for that length of time! PAH is very organized in coordinating volunteers... more »

  Kevin A. Barnes wrote:

I was diagnosed with Crohn's disease in 1975 at the age of 12 and quickly discovered how little was known about the disease, other than the fact it was "incurable" and that treatment options bordered on nonexistent. In the 35 years since my diagnosis,... more »

  MBCady wrote:

I have worked for this organization since 2012. Serving as the Director of Patient Education & Support involves organizing and maintaining support groups, holding educational forums, providing advice and suggesting resources that can help patients and... more »

  jhenry wrote:

Diabetes during pregnancy is a serious condition, causing many complications, most of which can be prevented. Sweet Success Diabetes and Pregnancy program was so successful in CA, it needed to be shared with programs in other states. Standards of practice... more »

  slavielle wrote:

The company I work for provides 40 hrs a year to volunteer during work hours. I chose NCADD because they work with women who are in need of counseling and education to better themselves because of dependence on alcohol and or drugs. These wome come to... 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 »

  MissEdie wrote:

I found out about the Lupus Foundation when I was faced with having to stop working after 20 years. I am a lupus patient and I have successfully managed to live well and control my lupus. I was feeling pretty useless, until I became a volunteer for the... more »

  grace wrote:

When i was first diagnosed, it was helpful to get all of the information that they had availaable. I also went to the support sessions for a few years. One of the best things they did was to send patient information packets to 2 people who had been... more »

  CureEndoNow wrote:

As a disease, endometriosis is plagued by misinformation, taboo, and delayed diagnosis. There is no cure, the symtoms are often misunderstood, and many treatments have serious side effects. There are huge needs for patient advocacy and support to correct... more »

  Katerosloff wrote:

I have personally observed the activities of the Center for the Partially Sighted over two decades. Their programs work - from elderly people learning to cope with macular degeneration to young people dealing with vision loss to people in the prime of... 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 »

  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 »

  chasingbliss wrote:

The ICA is a wonderful organization dedicated to supporting IC patients and their friends & family. They are focused on educating and informing us about current research, news and advocacy through excellent publications such as the ICA Update and the... more »

  SPcurtiss wrote:

The National Aphasia Association is a direct link to communication advocacy. I volunteer for this association because it has all the right resources at all the right times. The web resources are fantastic. When people lose their communication, the... more »

  jaidun wrote:

I have been a volunteer at the Indiana Parkinsons'a foundation and seen the incredible work the trainers do with the clients. Besides the exercises, there is a real family atmosphere, where everyone is welcome. The climb is an amazing non- profit!!... more »

  Dskurth wrote:

Wonderful down to earth organization With down to earth people. The horses are well cared for and they do so much for disabled, autistic, and handicaped kids of all ages. Most of the horses are retired competition horses who now can give bad their knowledge... more »

  Zoe2014 wrote:

Great nonprofit grass root organization. No one on the staff is paid. Truly a labor of love and compassion to promote autoimmune disease awareness, specifically systemic lupus awareness. more »

  meredith carlile wrote:

This oranization was essential in helping not only my daughter handle her diabetes more suffiently but our whole family as well. They gave us the strength to realize it could be done. They offer a monthly support meeting as well as education for family... more »

  dre123 wrote:

Im president of my school's Spanish Club and our club adviser's little boy unfortunately suffers from Type 1 diabetes, it is just heartbreaking to have to see him take test bloods at least 6 times a day and even be discriminated in his soccer team just... more »

  Greg O. wrote:

Fantastic charity that supports research to treat pediatric eye diseases. more »

  Jennifer140 wrote:

CCA has been helping my family since I discovered my child would be born with a birth defect at 30wks gestation. They have helped with every single 7 trips to Boston from Alabama in past 5 years for my child born with a cleft to have amazing drs. I... more »

  ellie4 wrote:

The AARDA is a org that helps people by giving them information about AI diseases. They are also involved in reaching the medical profession to spread info, increase awearness and help get laws passed to aid in funding and research. There are over 50... more »

  steelaster wrote:

Infectious diseases are disproportionately represented amongst resource-poor countries. If you're truly concerned about social justice, equality, and global health, this is a great organization to support. They do SO MUCH with their lean staff, really... more »

  T3am_L3ad wrote:

Foundations. Charities. They do great things and need donors, of which, I often donate to charities of my choice based on that charities mission and fiscal responsibility. What I don't want is for an organization, this one, calling my home phone a few... more »

  Always for a Cause wrote:

The mismanagement of this organization is dreadful. Local Directors seem to rule with an erratic, iron first. Favoritism is rampant and mission- and revenue-driven results appear to have little impact on decision making. It's sad and would be embarrassing... more »

  abetpds wrote:

Day one fitness as has been a miracle for me and my husband. With Alzheimer’s my husband refused to move and thanks to this facility his mobility has improved greatly. I am no longer afraid of him falling since his stability is much improved more »

  Laura119 wrote:

I have been involved with the Save Babies Through Screening Foundation for almost 5 years, since my child's metabolic disorder was detected by birth through newborn screening. SBTS provides more information and resources on newborn screening... more »

  lucia00 wrote:

Crohnsnomore is a great organization with great people helping those who suffer from this awful condition. Awareness and keeping as healthy as possible is key in making strides towards better health. Thanks for all you do. more »

  Kim wrote:

Platelet Disorder Support Association (PDSA) is a GREAT organization. You’ll find helpful resource for patients with Immune Thrombocyto Penia (ITP). PDSA Provides education, treatment information from top doctors who treat ITP patients and a... more »

  davidkingjer wrote:

This organization has always been available to help anyone that needed help in the world of diabetes. I started with them more than 24 years ago and never regretted a moment Their web site www.jewishdiabetes.org is very informative with important updated... more »

  robinnest wrote:

I partiicpated in a Formum on Domestic Violence against women. The entire event was well planned. The Exective Director, Ms. Johnson was organized and prompt. She faciliated the flow with the speaker and the question-answer period. She made everyone... more »

  Alisa Ann Ruch Burn Foundation wrote:

The Alisa Ann Ruch Burn Foundation’s mission is to enhance the quality of life for burn survivors and promote burn prevention education in California. Celebrating over 40 years of service, AARBF works in partnership with local firefighters, educators,... more »

  belvoce64 wrote:

Since having joined the PRF team a little over 3 years ago I am amazed sometimes how much we have grown as an organization and how far we have come. Every time I participate in one of the educational programs I am overcome with fascination to see how... more »

  hope4us wrote:

Suffering with a poorly understood debilitating neuroimmune illness has wrecked havoc in my life. Phoenix Rising opened up my world to other sufferers just like me. They provided not only much needed information on medical care, treatments, and the... more »

  mansfieldf wrote:

I was asked to serve on the board because the organization wanted to expand its reach into the minority community and to better assist those returning from a period of incarceration. Virtually all of the ideas and suggestions I put forth were... more »

  brenvani wrote:

EPDA provides many services for people with diabetes in the area. They have diabetes educators who understand and know how to teach patients and ways to address their barriers. This organization has been helpful in engaging the public to raise awareness... more »

  Shannan B. wrote:

As a volunteer for Setebaid Services camping programs, I got to see first hand how many children gain valuable resources from going to camp. As a young person living with Type 1 diabetes, it is often hard to find others that can relate to your experiences... more »

  JTSA wrote:

This is part 1 of a review of this organization. I have serious concerns with regard to CTWHH. They were addressed in writing to the organization which promised by e-mail to respond but did not. The letter was sent certified and can be viewed by Facebook... more »

  katlizjen wrote:

This outfit is a rip-off. 85% of the money goes to raising more money. They keep calling your house about twice a week and will not stop calling when you ask them to take you off of their list. more »

  jb2009 wrote:

I learned more in one day about my diabetes than I had learned in all my years of living with it. TCOYD gave me what I need to stay in control of my diabetes. more »

  Cynthia O. wrote:

They say that Disneyland is the Happiest Place on Earth. Not so. Just ask anybody who has spent anytime in any capacity at the Painted Turtle Camp. It doesn't matter if you are a camper,volunteer,staff, family of a camper or a visiter of the yearly open... more »

  liz12 wrote:

Obstetric fistula is a devastating and debilitating injury to women during child birth.Women are left smelling and leaking urine and/or feces uncontrollably and therefore end up as outcasts of society. One By One have been terrific donors for our program... more »

  Tabitha3 wrote:

Wake Up Narcolepsy has made a huge difference for people with narcolepsy by spreading awareness and funding research. I have volunteered with them over the last 4 years and our son with narcolepsy has greatly benefited from the work they do. I like... more »

  pcoslady wrote:

This organization has given me strength, confidence nad the feeling of belonging. more »

  Reisa_Berg wrote:

I am having an incredible experience at LICADD. While at first I was a bit overwhelmed by how much I had to learn, the clinicians have been so incredibly welcoming and helpful in guiding me through the process. In my previous internships I did not feel... more »

  Mary M.2 wrote:

I have never seen a more caring or hard working nonprofit than ABC Hopes. They truly care about the young people with disabilities that they serve and they strive to help them become as healthy and self sufficient as they can. more »

  kabuki wrote:

I had first symptom of Pemphigus in late 2001. Was misdiagnosed for five months and then started on meds. Took ten years for remission to happen. When I looked on the Internet for information, hardly anything existed -- but I did find the pemphigus... more »

  brandsol wrote:

My daughter Carly was diagnosed with a Mitochondrial Disease when she was 5 years old. She will be 17 this summer and without The Mitochondrial Disease Foundation (UMDF) and their personal touch her life would have been very different. Every day I live... more »

  bobn wrote:

This non-profit has done very little with the tremendous amount of money they have received. It operates primarily as a jobs program for its staff and allows them to play golf with celebrities. There are far more effective organizations to give your money... more »

  Lisa Haluszka R. wrote:

Love, love, LOVE this place! Cute little boutique filled with wonderfully scented items for your bath. You can choose from a variety of scents or create your own on the spot (in lotions) or in a class (in candles and bath bombs). Fun place to purchase... more »

  Hope4HH wrote:

ME/CFS San Diego works hard to raise awareness among healthcare workers on this poorly understood medical condition, and to help support the ME/CSF community generally. As I have a family member with undiagnosed chronic illness, I understand how alienating... more »

  Carie S.1 wrote:

I have worked in Long-term care for many years. I can confirm how vital it is for care team members to have the information The Who I Am Foundation provides…it helps the team see each patient/resident as a whole person who has a history, a life, and... more »

  a.good.mommy wrote:

When my daughter was diagnosed with an infectious disease in the weeks after joining our family through adoption in 2002, I was full of fear for her and for our family. My local pediatrician had little experience with the virus and I didn't know where... 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 »

  markcubs wrote:

As a type 1 diabetic of over 30 years, the ADA is by far the #1 non profit doing great research on diabetes in America. 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 »

  Louise Pinter wrote:

After 8 years of disability as a result of Rheumatoid arthritis, three years ago I began to feel great and my rheumatologist suggested that I become involved with WITHIN OUR REACH: FINDING A CURE FOR RHEUMATOID ARTHRITIS, a project of the ACR Research... more »

  philanthropistforbetter wrote:

This organization supports a very important disease most people don't know about. I was educated about the disease from the well organized benefits that are held every year. They have very informative speakers and great silent auction items at their... more »

  natalie10 wrote:

The Moebius Syndrome Foundation is an invaluable resource to those interested in or affected by this rare disorder. more »

  Corinneb wrote:

My son was born with a vascular tumor across the right side of his face. With he support and help of the VBF, I found experts in the field that would do the best thing for my son. I joined the VBF to continue the mission of help other patients and families... more »

  jory1961 wrote:

Hope Instilled is such an amazing source of information for people living with chronic pain. I have never seen so many alternative treatment options explained in one place, and no one is trying to sell me anything. You are able to get a better understanding... more »

  Peggy Vura wrote:

Diabetes Partnership Cleveland has group for women with diabetes called Dive Empowerment Group that meets every second Saturday of the month. This group has taught me so much about managing my diabetes. I have learned nutritional facts, and about carb... more »

  Tracey H.1 wrote:

This amazing group brings awareness to others about the rare disease MSA and supports research activity. More so, I am impressed with the support services they offer to patients and caregivers. more »

  Tina96 wrote:

The Charm Foundation is one of the only patientcentric organizations for Lupus. Charm Foundation's goals are to help lupus warriors to reach each for support, educate the public about Lupus, and assist the individual patient by offering guidance and... more »

  wizbang99 wrote:

No stars... I attemped to join this organizations web message board which is supposedly set up to benefit people like myself who suffer from a particular medical condition. I found one could not use the message board unless one paid a fee, which they... more »

  katsbeau wrote:

An amazing organization. They serve homeless and poor people in so many ways. They have a high percentage of funds go to services and a great track record since 1972. I donate and volunteer to the rescue mission. more »

  JustOne wrote:

It is amazing to watch such a large orgainzation struggle so severely with management and organization. The leadership selected and prmoted are by fair the least mission centric, donor related individuals. All-in-all, a very scary organization more »

  n-ballengerhotmailcom wrote:

I was told ten years ago that I had Lupus and have found their webpage and news letters to be very informative. I have found out things about the dangers in everyday life that can be bad for us with lupus. There are important articals from doctor's, test... more »

  JTSA wrote:

This is a membership nonprofit which requires annual dues. This organization was sent a certified letter requesting a copy of the by-laws in order to discover how they add people to the Board of Directors. The certified letter was sent by a dues-paying... more »

  rachaelkfoundation wrote:

Rachael K Foundation is a nonprofit organization that cares and serve others with special needs in our community, with an emphasis with cerebral palsy and all kind of disabilities i am glad to have them in our community. more »

  Lisa134 wrote:

The mission statement of ThomasHelps is: The ThomasHelps Foundation is a 501(c)3 non-profit memorial foundation in memory of Thomas Josef Tohati, Jr. Throughout his five years, Thomas exemplified the true meaning of love, generosity, and giving. ThomasHelps... more »

  Jen_M2 wrote:

Years ago I lost my dad and brother to brain tumors. It was a pretty devastating time and we began to wonder if cancer was hereditary. When my daughter was 3, she developed a rare adrenal tumor and a sarcoma, I searched for someone who understood. Through... more »

  lovetovolunteer wrote:

I want to say that this charity does good work and is great for our community, however, my experience was clouded by the religious discrimination that I encountered while working with this nonprofit. I felt that they were intolerant toward other religious... more »

  dr.annie.degroot wrote:

Why I give to GAIA and I would like to ask you to give too: It is no secret that I am one of the founders of GAIA Vaccine Foundation. What you may not know is that I gave $500 per... more »

  Christian J. wrote:

Beautiful well produced events to create awareness about Endometriosis. I will volunteer again! more »

  zalpha123 wrote:

Amazing organisation for a neglected cause. Kudos to the Buck and their patrons. more »

  Shannon Burkoth wrote:

Project Sleep is an amazing organization dedicated to and passionate about raising critical awareness about narcolepsy and sleep disorders. PS spearheads several initiatives each year including policy, research, awareness, and education. PS also equips... more »

  Annie39 wrote:

I have been a volunteer for the Lyme Disease Association, Inc. (LDA) since 1992. What amazes me about the people I work with is that everyone is a volunteer! Even the Officers and the Board members freely give their time to help people suffering with... more »

  lipodystrophy wrote:

When I first started volunteering with Lipodystrophy United, I had no idea how deeply this organization would shape my life. What began as a simple desire to help quickly turned into a meaningful journey of advocacy, learning, and community building. From... more »

  davidhardinsr wrote:

My local business TANDEMONIUM TANDEM BICYCLE RENTALS, was invited by The Obesity Prevention Coalition, to participate in the Decatur Celebration Parade for the last 2 years! I would like to include them in a monthly donation program starting in April... more »

  barbie9095 wrote:

I found physicians and answers through this group that I do not think I would have found on my own. There are thousands of polio survivors in Texas who have had contact and help from TPSA, Inc. We are now working with Rotary International... more »

  Pam SoBlessed A. wrote:

The anniversary of my grandson Joshua cade is coming up July 7 and it has been 14 yrs now and my oldest grandson Joshua brother has been having so much pain because of the loss of his brother especially when he see other kids with they sibling and... more »

  Stela4luna wrote:

This organization supports one of the most disabling diseases to families. It supports great research, families and the medical community. more »

  beckster011 wrote:

I joined in a private fb support group and have also completed my patient survey. This group has pros and cons. Pros : The entire purpose is to "find a cure." This is almost impossible as the rate genetic disease is within our DNA. It gives me hope they... more »

  Rosalinda K. wrote:

We heard about Dr. Levine and Success in Minds through a friend. We read his books and felt that Success in Minds could be beneficial for our son. We homeschool our son and have had to accommodate learning differences for him. He is twice-exceptional--he... more »

  schroederrosemary wrote:

The New Jersey State organization of Cystic Fibrosis helps families deal with special needs of children and adults with cystic fibrosis who reside in New Jersey. Families from every County in New Jersey benefit from the programs of this fine organization.... more »

  jlynnleonard wrote:

My daughter was diagnosed with FOXG1 in 2013. Since finding the International FOXG1 Foundation I've been able to learn more about FOXG1, how to help my daughter with her daily living, and meet clinicians and researchers around the world. I've been fortunate... more »

  lindseyg wrote:

Fresh Start has been an incredible place to volunteer for the past year. I was looking to add more volunteer work to my schedule and learn more about the non profit world at the same time. I found Fresh Start and was immediately drawn to their mission... more »

  unclep wrote:

After receiving the diagnosis for my child, I was in shock. I found this organization, I found answers. The President of the organization was a wealth of information. She had all the answers I needed, and was able to go back to tell my doctor. I am very... more »

  Voit43 wrote:

This company is not supporting a cause sole purpose to obtain loans and lines of credit. 2721 Bent Branch Dr Mesquite Tx 75181 T Miller principle owner is schemer and a stalker invaded my privacy by purchasing my credit profile. Mentally disabled,... more »

  maggie wrote:

This is an all-volunteer web-based organization, with no paid employees or administrative costs. An excellent source for extensive information about sudden death at all ages and its connection with autonomic dysfunction, including research, assistive... more »

  Julia84 wrote:

I worked for NCLD for three years and was always inspired by the work to both support young people with learning disabilities and attention issues as well as to advocate for their rights and systemic changes in school systems and national policies. 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 »

  tekkun wrote:

The Lupus Foundation worked on a grass roots level to educate the public about Lupus, to educate patients and the community at large about resources avaialable for those afflcted with Lupus and advocate for greater research funds for a cure. more »

  eichs wrote:

After my initial diagnosis, LRF was the go to for me to gather information relating to my new disease. They provided me with the tools to help me navigate the health maze and continue to support me through critical information on new treatments as well... more »

  vix7 wrote:

I began volunteering for S.T.A.R.S. of El Paso, TX in March 2008. This is an amazing organization!! As volunteers, we are taught about myths associated with sexual assaults and their victims or perpetrators and how to provide crisis intervention to... more »

  NaraCano wrote:

After my diagnosis, being the first in my family with Fabry Disease was scary. I had never heard of the disease before, nor had I knowingly met anyone else diagnosed with it. As I researched, I came across NFDF and FSIG, both of which were incredibly... more »

  mobileUser619509 wrote:

The leadership of this organization is inspirational. They work tirelessly for their daughter Tess and kids like her. The USP7 community is lucky to have them. more »

  JudyLucas wrote:

Our organization, Friends of Fieldworkers, was blessed to have A Voice Discovered bring new life and understanding/speech production to one of the children of our fieldworker families. His mom sent me a photo of him at the annual Christmas party and it... more »

  Writer wrote:

The NB process they teach for people affected by FASD have made a huge positive impact on how I parent my children. It has reduced meltdowns and improved our relationship. more »

  robertehyman wrote:

Not really sure what this group is up to...I contacted them to see what the status of their recovery expedition was but could not get any answers. Their web site and Facebook page have now been taken down. It appears that the group has had one fundraising... more »

  Susanne C. wrote:

Great organization for educating the public about those living with Attention Deficit Hyperactivity Disorder [ADHD]. Living with ADHD and raised three children with the same, I found much needed support from their website. 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 »

  xnowakowski wrote:

USACFA centers the voices of adults living with CF and supports us in fulfilling our dreams. We offer a number of unique scholarships and a quarterly publication for and by adult CF community members. Everyone on the Board has CF ourselves and understands... more »

The southeastern pans/pandas association is a group of medical professionals and parents whohave teamed up to raise the awareness... more »

The purpose of the Southeast Florida Chapter is to provide ongoing support, information and hope to any persons touched by lupus.... more »

Camp experience for cancer patients more »

Raise awareness about costello syndrome more »

Support & assistance to vision impaired children and adults more »

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