• 30% of children with rare disease will not live to see their 5th birthday.

  • Rare diseases are responsible for 35% of deaths in the first year of life.


the orphan drug act

​Prior to enactment of the ODA in 1983:

  • Only 38 drugs were approved in the US to treat orphan diseases.      

1983 - 2010:

  • FDA approved 353 orphan drugs.
  • Granted orphan designation to 2,116 compounds. 

Of 7,000 Rare Diseases:

  •  Fewer than 450 orphan products have been approved, treating only 250 rare diseases.  


What is a Rare Disease?

  • A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.





about us


We are a non-profit 501(C) 3 Florida Organization. Founded by Grace Loeb, whose son has a rare disease.

Mission:  To raise funds and awareness in an effort to fight rare diseases.


Vision:  Increase understanding and eliminate stigma for children living with rare diseases. ​
​​In addition, to actively seek help from research and pharmaceutical companies. We provide guidance, support and unity for children in our community through education and support programs.
​We hope to become a mentor and a role model, to inspire and promote self-confidence.
together we  make a difference

rare diseases

​ Then & now


​​
Without awareness, there is no funding. Without funding, there is no research. Without research, there is no cure.   Without a cure, there is no hope.
We need to work together.
To make sure there is always hope.



We need to educate policymakers, medical professionals, patients and caregivers, and the general public and empower them to advocate for those affected by rare diseases. Advocating at the local and national level to improve the lives of people living with a rare disease and their families is necessary.




Join Us In Making the VOICE of RARE DIEASES HEARD!

              Share the Rare Disease Day 2016 video

Please Join Us on February 28th by becoming a Sponsor, forming a Team or registering to walk.​


For Sponsorship Information 

To Register To Walk



Sign your name to the White House petition asking President Obama to create an Executive Order for Rare Disease Day.  We need 99,000 signatures to make it happen!

    The Rare Disease Day 2016 - Patient Voice

Voz del Paciente Dia de las Enfermedades Raras

donate TO HELP THOSE IMPACTED BY A RARE DISEASE

  

Guardian hands foundation

                      Fighting Rare Diseases to Make a Difference While Being Different