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 »

  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 »

  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 »

  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 »

  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 »

  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 »

  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 »

  Kevin58 wrote:

I just want to say that The take a breather foundation is a great organization, not only because the wishes of many people are granted but because it helps the families as well ease the burden of what living with Cystic Fibrosis is. It also helps with... 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 »

  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 »

  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 »

  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 »

  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 »

  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 »

  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 »

  orthodoc wrote:

After we donated, we were besieged with calls every two days from telemarketers calling on behalf of this organization. We asked multiple times to be put on the do-not-call list and were ignored every time. Regardless of the merits of their cause, this... 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 »

  mobileUser425722 wrote:

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

  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 »