Find Birth Defects & Genetic Diseases Nonprofits and Charities

  mse wrote:

This charity requires you send a photo of yourself before they will donate a flight. I have gone through several other charities for free flights to treatment and have never been asked for a photo. To ask is one thing but these people REQUIRE it before... more »

  BReise wrote:

DeLois Greenwood, VP of Smile Train is paid in excess of $310,000 per year. She is also provided an apartment in New York City paid for by Smile Train. Several other employees earn in excess or close to the $200,000 per year amount. Why are these employees... more »

  Jessica234567 wrote:

CCBs sent our son Oliver a care package when he was in the hospital. The package brightened our day and helped out in the hospital. What a fantastic organization! more »

  JPVMurphy wrote:

DES Action USA was my saving grace when I found it 13 years ago. Suffering health issues from the effects of my pre-natal exposure to DES they provided the information I had been seeking for years. They are the ONLY organization that serves the DES... more »

  dyoder wrote:

I just found the MAGIC Foundation this year when I was faced with a medical mystery with my son who is now 3. He stopped growing properly when he was less than six months old and after a parade of doctors I realized that it was up to me to find out how... 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 »

  Abby11 wrote:

My son was diagnosed with a rare chromosomal deletion (5q11.2-q13.2) at 13 months of age and we were told there was no other information for us about this deletion. We felt completely alone. Then somehow I found Chromosome Disorder Outreach and became... more »

  Rachel71 wrote:

The information and access to medical specialists that DC Outreach connected me to was truly life saving for my infant son. I am proud to be a part of this group and to work to connect other families to this help and support. more »

  Leslie A. wrote:

I have been associated with ECF for over three decades. It has become the premiere vendor of services in the greater Los Angeles area. Its breath of services covers birth to senior citizen, excelling in each program. I know this because i have spoken... more »

  Radarsmom wrote:

I lost my beloved 1st son in October of 2007 after a Trisomy 18 diagnosis. I knew nothing about trisomy 18 and knew no one else that had walked this heartbreaking road. Through the Trisomy 18 Foundation, I found much more information than even my doctor... more »

  Mike G.4 wrote:

This group is non-stop. There are a dozen families on the board and they are all working to raise both awareness of Syngap and funding for research. I am blown away by the team here. Also the founder cover all operating costs so 100% of donations go... more »

  Tammie wrote:

Our general doctor was the one who found the IWSA for us. As first time parents we were scared enough, but when Evie was 3 days old we found out that our lives were about to take a dramatic turn by hearing that she had no irises in her eyes, that she... more »

  TobyAnders wrote:

Reins is a wonderful program where all the kids and voulnteers love everything about it. I volunteer there every Wednesday and Friday afternoon and I absolutely love it. The instructors are the sweetest and nicest people as are the other voulnteers.... more »

  Claudia34 wrote:

22q Texas has saved me. The group of men and women behind this group will never know the depths of my love for them. We are about 6 months into the journey with 22q as my daughter was diagnosed at the beginning of the year. I have made many friendships,... more »

  mobileUser425722 wrote:

More than awareness to reduce the age of diagnosis, TSF provides free access to education resources & support more »

  miriamjayne wrote:

You will rarely meet a more committed, compassionate team behind such an effective organization. I can't emphasize enough how powerful it is to be involved with this organization as a donor, and to know that my dollars are making a meaningful difference... more »

  Rachaeleq wrote:

Equi-Ed is a wonderfully magical place! The horses are gentle, kind and quiet. The volunteers are professional, and help to keep everything running safely and smoothly! What a wonderful facility and program. Thank you! more »

  megskaggs wrote:

I will never forget the day that I received a care package from Breath of Hope. My son was about 16 days old and fighting for his life. He was born with a congenital diaphragmatic hernia and we received so many thoughtful items in our care packages. I... 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 »

  mikeaman wrote:

a great cause and a magnificent people. this is a very new foundation and is really serving a need for those who are looking to genetic testing to help. more »

  karen27 wrote:

1p36 Deletion Syndrome is a chromosome disorder that is characterized by moderate to severe intellectual disability, delayed growth, limited speech ability and distinct facial features. It is estimated that 1p36 Deletion Syndrome occurs in one in every... more »

  kikaibear wrote:

I'm so happy to know about this non profit and every opportunity I get I tell others who could benefit from it. It has made all the difference in my life and helped me through tough times. I know many people who the group has had a life changing impact.... more »

  Julie134 wrote:

I just wanted to say how much our family appreciates you guys. My grand daughter Alexis Harding has gone without being diagnosed for almost 4 years , now we know what her health issues are and how to deal with this. you guys have been very supportive... more »

  jsills wrote:

The CSNK2A1 Foundation is the leading research organization studying Okur Chung Neurodevelopmental Syndrome. They have annual conferences for families and scientists and contract with research facilities all around the world to learn more and hopefully... more »

  SyngapRF wrote:

This is a remarkable organization. Started by 5 families they are moving mountains to accelerate a therapy for kids with STXBP1. As the leader of another Rare Disease organization, we have seen this team in action up close and we are impressed. STXers... more »

  mark32 wrote:

I was Responsible for the management of the Business Computer Skills program of this non-profit rehabilitation center. I Supervised two classroom aid employees and instructed 25 adults with multiple disabilities, in use of Office software. We used... more »

  Writer wrote:

Rare Genomics (RG) is helping rare disease patients (mainly kids) find hope for a cure. That's the reason why I joined the organization. RG focusses on individuals with rare diseases which face similar challenges. Within Marketing we are looking for ways... more »

  Cure VCP Disease wrote:

Great organization that is focused on collaboration between USA and India rare disease patient advocacy organizations. IndoUSRare helped make a connection to doctors in India that were aware of my rare disease. This is just the start and networking... more »

  Sean G.1 wrote:

I have worked with Rare Ghana Initiative (RDGI) and found the team very professional and dedicated to helping people in a difficult medical, economic and regulatory environment. In all jurisdictions around the people with rare diseases are challenged,... more »

  mitoadvocate wrote:

Cure Mito Foundation truly puts patients first and moves mountains daily to reach treatments and cures for Leigh syndrome and mitochondrial disease. All patients affected by Leigh syndrome - please join Cure Mito in our common mission. more »

  sasha wrote:

my name is jessica and I have daughter who just turned three who has celebral palsy. I found this organzation online when I was just browsing one day. This is the greatest place for people to go if you have a child with a disabilty. Insurance only covers... more »

  argasdoc wrote:

I volunteered as an anesthesiologist for this organization on a recent trip to Dhaka, Bangladesh. I was impressed with the dedication of the staff and volunteers to provide repairs to cleft lips and palates that the children of Dhaka. The quality of care... more »

  Marytza S. wrote:

WITH out you guys my son wouldnt get the HELP he needs hes progressed so much thank you so much for everything UCP SCHOOL IN THE EAST CAMPUS BAILY CENTER 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 »

  mommytobobby wrote:

When we first received the diagnosis we had no idea what to do next. I thank God every day for the Williams Syndrome Association and the support they have provided me and my family. Because of their close ties with the medical and research community,... more »

  Samuel C.1 wrote:

Kids will always come first and this organization is all about them. The staff and volunteers are amazing and wont hesitate to help a family in need. Some people spend a lifetime wondering if they made a difference, this organization doesnt have that... 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 »

  MirandaM wrote:

All the ladies on the board of directors are wonderful, compassionate and so helpful. Especially Cathy she has gone above and beyond to educate me on all aspects of EDS, so that I could advocate for my child. I am forever grateful. This knowledge that... more »

  NinaBDRC wrote:

I first discovered Birth Defect Research for Children (BDRC) after the birth of my second daughter who was born with multiple birth defects. I was initially shocked and devastated; I couldn’t believe it happened to me and my child. What tormented... more »

  Petad wrote:

What an incredible organization, doing great work to help children, young adults, parents, and schools. I have volunteered with this organization for seven years and every day I continue to be impressed with their work. Key members of the staff have been... more »

  SyngapRF wrote:

The leader of this organization is non-stop and so very dedicated. We see her at every turn trying to help her community. SDS patients are lucky to have such a dedicated, talented and hard-working professional working. on their behalf. more »

  ltsering wrote:

Jeena has made a profound difference in hundreds of lives. As the first and only center for South Asian special-needs kids, Jeena has helped hundreds of families across the United States -- and now in India too -- cope with the challenges of raising mentally... more »

  heartmom21 wrote:

Our son had heart surgery 2 years ago this month. We had known he would need surgery around age four, but he started having problems at 28 months. He had his surgery within a few weeks, and we got invited to a Heart party at the park. This was where... more »

  nursemom94 wrote:

ACHA has raised my awareness for the need of this specialized care. Because of ACHA I was able to learn of the most common and serious complication of my heart defect. When I experienced one of these complications I acted quickly and call the paramedics.... more »

  elena1 wrote:

The tireless effort of the founders do whatever is necessary to find a cure for this rare disease is amazing 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 »

  Writer wrote:

The miracle of the Miracle League of Delray Beach is the way it touches everyone who touches it. From the special needs players who are stars on the baseball diamond, to the angels in the field who get to play with them. From the coaches who have a... more »

  Mark201 wrote:

As the parent of a FAR client, the impact FAR Therapeutic Arts And Recreation has on them is far reaching. I have witnessed clients develop confidence and social skills so important in providing them the opportunity to be on an equal footing to their... more »

  tim.evans21042 wrote:

I have been very fortunate to volunteer with the Genes Foundation on many activities including their Annual Fashion Show, which is an amazing inclusive event. The joy that it brings to the participants and those attending is incredible. They are always... more »

  KyndallParker wrote:

Little Light House is a place that I imagine heaven feels like. It's pure joy from the moment you walk through the door. Little Light House serves special needs students, their families and communities by providing educational and therapy services tuition... more »

  jayhawksunflowergirl wrote:

CHD Families has been a great group to be connected with! They do wonderful things for people who need assistance and support at challenging times. The networking with other families dealing with CHD is fantastic and has helped us a great deal! more »

  stefanieo wrote:

Gavin's Got Heart is a non-profit organization dedicated to raising awareness about CHD's (Congenital Heart Defects) and supporting families in their local community who are affected by them. I have been to a number of GGH functions and fundraisers... 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 »

  adiegrey wrote:

Lymphedema is a tricky condition that is little understood by much of the general population as well as the medical community. As a patient and a therapist in this realm, I am always grateful for excellent education on the subject, and I get that from... more »

  Katrina Weger M. wrote:

Progressive organization making great strides towards improving the services available to children and adults with intellectual and developmental disabilities. Vocational training, Independent living skills, Health and Nutrition, Academics and Community... more »

  ABJMom wrote:

Parkinsons Resource Organization (PRO) is a small nonprofit with a huge heart and a huge mission. As a caregiver for my husband, who battled Parkinsons from a relatively young age, and now as a CNA in a skilled nursing facility, I have found that PRO... more »

  HeidiWebbCFRE wrote:

I first learned of Project 8p at a rare disease-oriented nonprofit conference. Bina Shah, the organization's founder, is smart, kind, and driven to ensure the success of the program. I especially love how wonderful they are with the families within the... more »

  loribeth31 wrote:

Tymeless hearts was a AMAZING after we lost EVERYTHING in a house fire just around Christmas time about 2 years ago! We got out with just the clothes on our backs . I have 4 children ages then was 6, 5 , 2 and 4 months old. Our 2 year old is our heart... more »

  shelly15 wrote:

well my story is that I was born with congenital heart deaffect. it is called trilogy of fallot. This organztion is one the best that I know. They are very helpful and people in the organztion is always trying find aways to make sure people understand... more »

  dnr_1 wrote:

Knowledge, expertise, kindness.... when looking for help, frustration can lead to hopelessness. Thankfully, EDS Wellness is a resource that can make a difference. One person at a time. 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 »

  breden3 wrote:

The staff and volunteers are awesome Everything they do to make sure every camper have the best time at camp they can have they treat all with respect and dignity. They keep everyone engaged in all activitiesIt is hard to describe the love joy and... more »

  Keva D. wrote:

This foundation helps families who wouldn’t otherwise qualify for assistance but need it. Our system is broke and Remingtons Heart gives those of us who are trying to make all the ends meet while caring for a critically ill baby Hope. It’s hard... more »

  nschnettler wrote:

I served on the Board of UCP-CM for nine years and I was never more impressed with the services provided by this agency! The number of people the agency has been able to assist is remarkable, considering the small number of staff. The executive director,... more »

  ineedakidney40 wrote:

I have PKD. This foundation has been raising money to help fund medical research that could be done to help bring an end to this life-threatening disease. If there is ever an end to PKD, it will be too late for me, but somebody will appreciate it. 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 »

  Uticabob wrote:

While not having direct contact from the client standpoint I have had positive contact with the staff and administration. I have not met a more dedicated or professional group that deal with the special clientel that are served by Wendell Foster... more »

  janetGHahn wrote:

Helping Swans is a phenomenal organization that strives to educate the community on inclusivity for special needs children. Helping Swans main goals are growing gap between autism experts and special needs families. You can learn effective... more »

  jean4 wrote:

Provides education and support services for adults & children with spina bifida. Offers annual benefit to help pay for equipment that is not covered by insurance. Great way to meet people who also have spina bifida. Contacts greatly help assist with... more »

  CHDDadforever wrote:

Midwest Heart Connection has allowed our family to connect with other families affected by congenital heart disease through special events, one-on-one conversations, and online support and resources. They have made us believe we are not alone in our... more »

  cbower52405 wrote:

Stephanie from Tinyhandprints found me when I was deep in the middle of my grief. She sent me books, support and the kind of friendship that I had been longing for. I am so thankful for this organization and all that it has done and is still doing for... more »

  BeetleBug wrote:

I have been involved with UCP for several years now. I often gather up friends and help out with one of their summertime events. The staff are great motivators, constantly reminding us of why we're there and what our help means for the organization.... more »

  Maureen wrote:

I am the guardian of a 54 year old woman with Down's Syndrome. Patricia has been living in an Enable managed Group Home for 15 years. Enable provides her with a safe, caring environment. She is happy in her living situation which is very important to... more »

  mkoltonski wrote:

Our daughter, Emily, was diagnosed with Sandhoff's Disease at the age if 3 back in 2008. NTSAD helped us connect with other families and provided literature on what to expect as Emily approached the end of her life. We attended the annual family conference... more »

  Lisa R. wrote:

The Boomer Esiason Foundation meets the needs of today's cystic fibrosis patients. Whether it be scholarships for patents to further their education, educational podcasts or donating monies for research, the BEF has those fighting with cystic fibrosis... more »

  Susan122 wrote:

For me, this charity organization started out as TAG (Trisomy Advocacy Group). Alisha Hauber was my first contact with this group. She is a wonderful Mom to a full Trisomy 18 boy named Lane. They both have inspired me and encouraged me so much with... more »

  Abbie3 wrote:

I volunteer, work, and donate for ETC. I've seen miracles happening at this place!! By using the therapy horses as connectors emotionally and by their natural movements to improve therapies for clients, it helps vastly improve results. I've seen kids... more »

  Kelly K. wrote:

So excited to now be a part of Easter Seals! Easter Seals Greater Houston, Inc. is a non-profit corporation established to provide comprehensive services to individuals of all ages with all types of disabilities and their families. In order to continue... more »

  Edouard Ruelle wrote:

I co-founded and am the president of the Children of Peru Foundation, a 501c3 charity doing work in Peru helping poor children in the areas of healthcare and education. The Children of Peru Foundation partnered with MMFC for the first time in... more »

  mellowswan wrote:

Mellowswan Foundation We are a international all volunteer, medical charitable non profit foundation. Our goal is to provide medical care for deformed orphans worldwide. Our volunteers work around the world researching clinics and doctors... more »

  JasonDoge wrote:

30% of the total funds go to 4 people's salary. The CEO makes over $250,000 a year - which is more than many charities that have 100 times the funds. They sell member provided information to for-profit pharmaceutical companies. This type of organization... more »

  vicncheri wrote:

This has been a wonderful resource for my family. Our son was diagnosed with Dup7 in March 2013 at 1 year old. We've learned so much from this group about what to expect and how to prepare for our son's bright future! Because Dup7 is so rare, this... more »

  lynnlievense wrote:

This organization is leading the way in research for the debilitating condition of Phelan-McDermid syndrome. As a grandparent to a child with PMS, I will do anything I can to support this org, as I believe it holds the key to improving the future of... more »

  natalie10 wrote:

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

  ThereseAnn wrote:

My own child is almost 17 years old, living with full (complete) trisomy 13 and SOFT at Trisomy.org has been a constant support for our family over the years. I go to the website and support groups daily and use and share the wealth of support the SOFT... more »

  Aimee E. wrote:

Hi my name is Aimee Eisaman and I've been a volunteer photographer at two of Genres Kids With Cancer Fund events. Both events were very well planned and organized. It was a pleasure to watch so many people come together for such a great cause. You... more »

  Maypahphd3 wrote:

Management treats employees terribly. I have seen first hand the abuse and how they ignore labor laws completely and threaten amazingly caring workers till they just quit. The workers who stay either are super caring or lazy and uncaring. Also the rate... more »

  foxyfirewoman wrote:

Special toys for Special Kids is an awesome organization.. As a female firefighter I have made it a lifelong commitment to help this organization by making yearly donations.. Its always great to see a grass roots organization help disabled children in... more »

  Nyugah wrote:

I have witnessed first hand the joys the Heart Foundation is giving to underprivileged Cardiac Patients who thought all hope was lost and was just waiting for their time to pass on to the next life. It's an experience words alone cannot express. It's... more »

  Lynne E. wrote:

This organization has helped take care of people with disabilities from birth throughout their whole life. There are many clients who started in one program as a small child, and progressed through their teen years, and now participate in our Adult programs.... more »

  vilma wrote:

It was in 1999 when my daughter Vanessa, then 14 years old started to show signs of a liver disease. Her eyes turned yellowish and she started vomiting. I sent her at a nearby government hospital but was rejected. So, I decided to bring her at a private... more »

  dina1026 wrote:

UCP of Eastern Connecticut is a dynamic organization that successfully promotes independence of individuals with a variety of disabilities in the community. Thanks to the hard work of staff and management of UCP, clients have successfully transitioned... more »

  EDSLynnCARES wrote:

EDS Network CARES is currently the only patient foundation funding Ehlers-Danlos Syndrome Research. We have funded 3 EDS Research projects in less than 10 years, since the foundation started. 100% of the research money fund goes towards research.... more »

  jamiec wrote:

Twin Rivers adult school program is fantastic. I spend a lot of time at adult day programs. Twin Rivers staff have huge hearts and are fantastic advocates for their participants. Loie Rhodes is the BEST! more »

  babbbss wrote:

The executive director was not equipped to do the job. more »

  lavedale wrote:

In April of 2011 I was contacted at my home by a member of the Huismann Sickle Cell Foundation, Mrs Sandra Rouse. She told me that they knew my husband and that I was a Sickle Cell patient. She took out the checkbook and wrote a timely check to me. We... more »

  vetster02 wrote:

This is an amazing place to work, and an awesome place to go to school. I have seen miracles happen here on a daily basis! Children thrive here and are cared for and nurtured as though staff was their family! I have been a part of first words, first steps,... more »

  Nollisa M. wrote:

Prisms is a great organization for finding information, parent support, fund raisers, & conferences for Smith-Magenis Syndrome (SMS). I've been involved with Prisms since Oct. 2000, shortly after our 4th daughter was diagnosed with SMS. Prisms does a... more »

  nicben wrote:

As a parent of a child with cerebral palsy,I am greatly disappointed in this organization. Over the years we have attempted to contact this organization via phone & email only to never have received any kind of response. We tried again a few months ago... more »

  SINCERITY3005 wrote:

COLLEGE PARK, GA CALL CTR.1. employees who are downright nasty and rude to the disabled callers. For example, one female employee who sat diagonally from me and was rude. our supervisor would hear her and never did anything. 2. employees who... 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 »

  Mindy P. wrote:

I tried to find out information on resources in the state of Arkansas for my daughter who was diagnosed with Cerebral Palsy. I was told that there was nothing this organization could do for me because I did not live in or around the Little Rock area.... more »

  K8sMom2002 wrote:

This program has been a lifesaver for my family, as my daughter has a rare bleeding disorder. The staff has gone above and beyond the call of duty to help us through some very tough issues. I really appreciate what they've done to help us and the outreach... more »

  Andrew W. wrote:

A wonderful organization that truly changes the lives of those families it serves. When our son was diagnosed with 49xxxxy, information for families was nearly non-existent. With the help of this charitable organization, families and their boys receive... more »

  Beklovessc wrote:

Gave money to this org for a new website in 2011 ... Thousands of dollars were raised ... It's over a year alter and still no website ... Never answers calls ... What happened to my money? more »

  Dawn R. wrote:

I am a parent volunteer, actually the family to family support coordinator. We have helped several families by providing resources, information, and referrals. We have also provided clothing, food, and help get a ramp built for a family. Our program started... more »

  jmeyer wrote:

This organization serves people who suffer from HHT. Without this foundation there would not be Centers of Excellence, medical facilities that provide many different types of medical care to HHT patients. Without the foundation there would not be any... more »

  lmcginnis wrote:

It is the greatest con out there, he looks and sounds like he is the real thing but he is not, go to silo.com and you will seewhat kind of stuff he is up to. He doesn't even pay child support for his own child that has this illness, not just a con but... more »

  mannehsumo wrote:

I have been involved with this nonprofit since 2005. Patients and parents of children suffering from sickle cell disease in third world country especially in Liberia west Africa have benefited tremendously from its disease and pain education programs... 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 »

  imacia wrote:

I love going to the thrift stores. I have found many great things at their stores that would have cost me a lot of money anywhere els. I found my favorite pair of jeans at their store in Pacific Beach. For $5 I got a pair and at other stores they cost... more »

  Cait Y. wrote:

When a family friend experienced the birth of their medically complex baby, they felt alone and scared. The Evelyn’s Treehouse leaders reached out to this family immediately and made an instant connection for support and love and understanding. The... more »

  Annette36 wrote:

This organization is amazing. It is wonderful to meet others who can answer all of your questions and support you through your journey. more »

  timloveskari wrote:

Hi, I noticed this site and sen the statement this site had placed. There was no reviews so I wanted to make a note. I was the one who wrote that statement. They not only helped us deal with something few could possibly grasp --as far as what we went... more »

  Walk On Foundation Inc. wrote:

Pennsylvania Cystic Fibrosis Inc. is a great asset to the Central Pa area and beyond. While many organization provide funding solely to research and finding a cause of a certain disease a few go beyond and assist those dealing with the disease with... 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 »

  jbstockings wrote:

The CF Foundation is one of the best at using their money for cutting edge research that WILL find a cure for cystic fibrosis. More than 90% of the money raised goes to research more »

  Christopher K.1 wrote:

One of my dearest friends Scott Marshall who has CP and I were best friends in H.S and we still stay connected today.I live in Vegas.Is there a way that i can do some plug/promoting of any events or causes here in Vegas and all over the country. on behalf... more »

  LAM908 wrote:

The A-T Children's Project is a tiny group that accomplishes tremendous non-profit work and achieves many goals. Since my child has been diagnosed with A-T they have provided a great amount of support to myself and in turn, to my family. They work tirelessly... more »

  jeanette1955 wrote:

The services I've received through UCP of Maine are very beneficial to helping make my daughter as independent as possible; without them we wouldn't be where we are today. My daughter is eighteen now it's great that this service can continue into her... more »

  tylermounce wrote:

I've volunteered and served with UP in a number of ways, and the impact this organization is having cannot be described in words.In addition to reaching underserved families who are affected by disabilities, UP is also an industry leader - with... more »

  Advocate12 wrote:

I have volunteered for this organization going on three years. I am disabled and devote two days a week to UCP and I have seen what they have done for children, adults and the community. I am inspired and motivated by the care and dedication I have... more »

  Writer wrote:

Thank you for all you have done for Jacob. We are so grateful! more »

  tpaes wrote:

I have 2 children with rare genetic disorders, CTNNB1 being much more rare than the other. Despite how much more rare this condition is, the CTNNB1 Connect & Cure NonProfit has been such a fantastic resource and support for our family. We’ve found hope,... more »

  jadewebmaster wrote:

I have been a volunteer with the Jade Foundation for exactly 10 years this month, and what an amazing, fulfilling, joyful experience it continues to be! The Jade Foundation was created in 1999 by MN's then-First Lady Terry Ventura, named for her and Gov.... more »

  MommytoOne wrote:

This Foundation has been around since the 1950's and provides tremendous support to the Maryland Bleeding Disorder Community. Community contributions include: Patient Service Assistance, Treatment Center Assistance, Educational Seminars, Family Retreats,... more »

  lilypea wrote:

This organization is shady. The little good they do is offset by the cuts they make to their consumers' services, while an elite few line their pockets. It is shameful and exemplifies how the term "non-profit" can be a misnomer. more »

  Elizabeth173 wrote:

We have two grandchildren with SMA type 1. SMA is the number 1 genetic killer of children under the age of 2. Our grandchildren have outlived their life expectancy and are now 12 & 14 years old. They take 24/7 365 care and their parents are... more »

Our mission is to improve the lives of patients and families worldwide affected by Progressive Familial Intrahepatic Cholestasis,... more »

The mission of holimont snowsports, inc is to operate the ski school and racing club at holimont for participants of all levels... more »

Catalyst for Youth picks up where other programs stop. Specially we work for the population of youth that cannot make it in a... more »

To extablish and expand local and national awareness and services regarding autism, focusing on increasing education, research,... more »

Focus + fragile kids understands and supports the unique needs of families with children who are medically fragile or have significant... more »

The mission of Easter Seals Jayne Shover Center is to serve individuals who have or are at risk for disabilities or developmental... more »

Richmond Cerebral Palsy Center was founded in 1938 by Mary Junkin to provide therapy and education to neurologically impaired... more »

Increase awareness and education, support research more »

Service provider to children, students and adults with a spectrum of abilities and disabilities. Services in escambia and santa... more »

The corporation was organized for the purpose of providing supervision, training and therapeutic, medical, educational and other... more »

To provide residential and training options for persons with developmental disabilities. more »

To provide services to people with disabilities more »

Ensure advocacy for sickle cell patients & other related disorders more »

The Society is a non-profit public service organization with a two-fold mission:To enable innovations in health for Turner syndrome... more »

Our mission is to positively affect quality of life for people with disabilities and special needs. more »

Raise funds to promote education and awareness; meet ever-increasing needs of individuals with gaucher disease and their families.... more »

Formed in 1948, the mission of CP Nassau -- United Cerebral Palsy Association of Nassau County, Inc. (ucpn) is to (a) affect positively... more »

As one of the largest health non-profits in America, United Cerebral Palsy's mission is to advance the independence, productivity... more »

Services for the disabled more »