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Rare Disease United Foundation

Rating: 4.8 stars   15 reviews 802

Nonprofit Issues:

Address:

P.O. Box 02916 Rumford RI 02916 USA

Mission:

Our mission is to build a strong rare disease community in Rhode Island, to provide support and information to our families, to raise awareness and to advocate for our families.

Results:

In our first year, the RIRDF has done the following in support of the rare disease community: -Our World Rare Disease Day 2012 was attended by 150 people and live-streamed around the world. -We have raised awareness for the community through a front page article in the Sunday Edition of the Providence Journal and a segment on WJAR Health Check. -We have advocated for the community by speaking on bills that would affect the rare disease community in RI -We are a member of the Rhode Island Health Advocacy Forum -We worked with Senator Sheldon Whitehouse on the EXPERRT Act which was signed into law in July 2012. -Our ist Annual Care for Rare Silent Auction not only raised money so we can continue to serve the rare disease community, but will be featured in the December 2012 issue of Rhode Island Monthly. -We are currently working with local schools to introduce rare diseases into the curriculum.

Target demographics:

people living with a rare disease

Programs:

World Rare Disease Day Event "Here for Rare" Meetups Educational Programs Advocacy

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More Info

401-434-0052
www.rarediseaseunited.org

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Reviews for Rare Disease United Foundation

Rating: 5 stars  

Patty is a beautiful woman who truly
helped me when I had lost hope in people. The RDUF will comfort and guide you on your life changing journey.

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Rating: 5 stars  

Rare Disease United Foundation is an excellent resource for individuals and organizations. The ability to create strength in numbers is something the rare disease community needs. Individually we may not have the voice and strength to be heard but together: Hear O.U.R. Voice will benefit us all. The Morgan Leary Vaughan Fund is happy to be a part of the Rare Disease United Foundation Family.

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Role: Professional with expertise in this field
Rating: 5 stars  

Rare Disease United Foundation is an effective and efficient patient advocacy organization. Their passion for making a difference is evident through their proactive outreach to patients and families as well as their powerful advocacy at the state level. They have built credibility at the state level, as well as the national level, with key stakeholders, policy makers, and third party partners. The patients and the volunteers are the hearts and hands that bring the mission of this organization to life!

If I had to make changes to this organization, I would...

secure more funding so that it could replicate efforts across the country. They have the skills and knowledge to do so. Their advocacy work in the rare disease space is outstanding.

How does this organization compare with others in the same sector?

Very Well

How much of an impact do you think this organization has?

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Rating: 5 stars  

Being a parent of a child with a rare disorder is extremely challenging! It is just one of the many roles so many of us have been dealing with all alone. We are fortunate to have an online family support network for our child's condition but this can get pretty lonely as families are so far away. Each country and each state has their own guidelines, rules and services to navigate.
When I first read the Providence Journal article about Patty Weltin and her goal to unite all of those touched by rare diseases, I felt tears of relief. Finally, it wasn't all about one disease or set of issues but rather uniting as a group that is dealing with so many of the same feelings, concerns and frustrations. The monthly support group meetings are a hidden gem. The advocacy is heart-warming. The high level of understanding and assistance provided for obtaining medications being used off-label has been a blessing. The many unique needs are a constant source of stress but having such a great advocate on my side, willing to help in any way possible, makes life just that much easier.
Being a part of this foundation has brought hope to our family. Hope for more understanding, support and compassion within the medical community, our political leaders, our friends and our families. Please, Care for Rare!

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Rating: 5 stars  

I am proud to be the first rare disease survivor that serves as President/Chair of the Rare Disease United Foundation's Board of Directors. I originally came to this organization through its "Care for Rare" survivorship support group meet ups. My goal was to meet people that are going through similar struggles as I face and seek peer-to-peer support. For me, I was not necessarily looking for others with my specific rare disease, rather people in my age group sharing similar issues of disability. Along the way, I learned more about parents with children of rare disease and other adults in my area with rare diseases that I still am grasping to understand and learn to pronounce. As I became more involved, I developed a passion for helping this organization grow. I believe that the strategic direction of RDUF to outreach directly to survivors and their family caregivers, advocate for systems change to promote better access to quality health care and social services for survivors, and generate a recognizable brand behind rare diseases that has been missing in the current landscape of nonprofit organizations supporting the rare disease community. It is my hope that RDUF will ascend as the lead organization on rare disease patient advocacy and public policy reform as this is the fast-track direction in which RDUF is heading. If you are a rare disease survivor or caregiver, this is the organization to seek support and information.

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

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Role: General Member of the Public
Rating: 5 stars  

I am an advocate for a rare disease called FIRES. It is form of epilepsy that takes a previously healthy kid and puts them into status without warning. Rare Disease United Foundation helped us spread the word by putting us in a monthly letter they put out. They also gave the parents of these kids a place to find more information on FIRES and direct them to our page, so parents with the same problems can talk to someone who understands. Love, love, love Patty!

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

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Rating: 5 stars  

The Rare Disease United Foundation is a dynamic entity due to its passionate, determined leadership. This organization has made a positive impact on the lives of thousands of rare disease patients and their families.

I am excited to see what the future holds as the Rare Disease United Foundation continues to capture the attention of the legislators, physicians and researchers. It sure is looking bright!

Lori Butler
Co-Founder, Music-Maker
Two Hearts Rockā„¢

Lori@2heartsrock.org

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Rating: 5 stars  

When my daughter got sick sudden in 2010 we did not know what was wrong with her and whether she would live or die. Since then I have worked hard to help other parents in the same situation. When I met Patty I knew I found another parent that wanted to change the world just like me. We both say all the time that while our diseases are different our struggles are the same. In being a part of the Rare Disease United Foundation I have met other parents going through the same thing as I am and I realize we are not alone. Recently my daughter was not approved, by the insurance company, for a medication she needs. Patty said the foundation would get involved to help us get approval and I was so grateful for that. It means I don't have to fight alone any more.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

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Rating: 3 stars  

As a Mom of an almost 14 year old daughter with a rare genetics disease/disorder (whichever you would like to call it). I have not been able to meet up with other parents as of yet due to scheduling issues. I do hope someday to meet other parents. I have connected through Facebook with parents who have the same genetic disorder as my daughter. It's amazing to hear things they are going through. Most of the parents are overseas unfortunately. My daughter has what's called 2q37 deletion. Please feel free to look up what it's about.

If I had to make changes to this organization, I would...

Nothing, I just hope to meet up with other parents in the group

Will you volunteer or donate to this organization?

Unsure

How much of an impact do you think this organization has?

Some

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Rating: 5 stars  

My daughter, my grandson and my two nephews have rare diseases. Patty Weltin and the Rare Disease United Foundation, (RDUF) helped me by listening. She took it upon herself to find resources that educated me and helped me to help my loved ones. Patty, the founder and executive director of RDUF, also connected me with people that had the same rare diseases, giving me an instant family that understood what my life was like and helped me with the helplessness I had been living with. The Rare Disease United Foundation is ESSENTIAL to the rare disease community. We need the RDUF to console us, to stand up for us, to fight at the state level for us! I'm not sure where I would be right now without their help. You need not live in isolation any more because the Rare Disease United Foundation and Patty Weltin are there for us. My deepest gratitude. Always!

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

Was this review helpful?