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Hope for Hypothalamic Hamartomas

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Nonprofit Overview

Causes: Education, Health, Human Service Organizations, Human Services

Mission: Hope for Hypothalamic Hamartomas (HopeForHH.org) provides information, support, and community to HH patients, caregivers, and healthcare providers. We promote research into early detection, improved treatments, living with HH as a complex medical syndrome, and a cure.

Target demographics: individuals and caregivers with Hypothalamic Hamartoma Syndrome

Geographic areas served: the international community.

Programs: We provide Hypothalamic Hamartoma Syndrome information to patients, caregivers, and healthcare providers. Our goal is to ensure patients have access to up-to-date information on HH diagnosis, treatment, research, and associated comorbidities. We drive new research toward early detection, improved treatments, and well as in finding a cure. We provide support to HH patients and caregivers through Patient Conferences, Patient Surgical Support bags, and one on one support programs.

Community Stories

9 Stories from Volunteers, Donors & Supporters

Anastasia S.3

Client Served

Rating: 5

Very helpful information on the website, and also the community.
You will be glad to meet and feel the support of people there.

Kathryn32

Board Member

Rating: 5

This nonprofit organization was able to provide information on our son's diagnosis, with current treatments and facilities for care . There is no other site regarding this ultra rare disease. They continue to search for the latest information, push medical care and treatment forward and provide support to families.

Previous Stories

Volunteer

Rating: 5

When our son was first diagnosed with HH we received the prognosis that he would be in a facility by the time he was a teenager. The neurologist did not feel there was anything that could be done. It was heartbreaking. My husband then searched the web and within 5 minutes we learned more from the Hope for HH site than we had from the doctor. We also found hope.

Volunteer

Rating: 5

My daughter was diagnosed in 2005. At the time there was no patient support or advocacy group for this rare disorder. This organization continues to provide support and hope to my family. I don't know what I would do without them.

Donor

Rating: 5

Hope for Hypothalmic Harmartomas is a phenomenal nonprofit doing excellent work to reach people throughout the country and in fact, world! In my professional work I interact and work on behalf of numerous nonprofit agencies and this one is certainly top of the line. Using a small overhead and highly educated and experienced staff and volunteers, this nonprofit is achieving great success in all that it does. Hope for Hypothalmic Harmartomas is an organization to invest in, both financially and with time!

General Member of the Public

Rating: 5

I have witnessed this organization working to make HH known to the general public, to provide a vast amount knowledge about treatment options in plain English and most importantly to give hope and compassion to families. Their work is selfless and tireless.

Ilene P.

Board Member

Rating: 5

I helped to found Hope for HH and in the past few years we have grown a solid community of patients, professionals and supporters of the foundation. With a completely volunteer staff, it has accomplished so much to raise awareness, expedite diagnoses, and ensure patients and caregivers are supported. The board of directors brings incredible motivation and energy to this cause!

Lisa417

Volunteer

Rating: 5

This organization helps so many people. It is incredibly well organized and the staff is dedicated beyond compare.

Client Served

Rating: 5

The information they provide, the advocacy they do, and the concern they show has been an extremely important resource as we navigate our son's diagnosis. They help connect people with this rare diagnosis to create important supports and share experiences. We would have been lost without this organization and I am so thankful for all the hard work they put into helping HH families. Thanks!